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Transplant Journal of Australasia Volume 23 No 1 March 2014

Before transplantation is donation

O f f i c i a l j o u r n a l o f t h e Tr a n s p l a n t N u r s e s â&#x20AC;&#x2122; A s s o c i a t i o n I n c .

Where When and How? Where Have We Been, Where Are We Going and How Do We Get There? Please join us for the ATCA AGM and 1 day conference program with esteemed guest speakers from the Organ and Tissue Donation and Transplantation Sector. The ATCA AGM will be held on Wednesday afternoon following the joint session with the Transplant Society of Australia and New Zealand (TSANZ). Wednesday evening will see the welcome drinks celebrated at a venue TBA. The annual conference will conclude with a 1 day meeting exploring all things organ and tissue donation/ transplantation.

When:

Wednesday 11th - Thursday 12th June, 2014

Where:

Australian National University Manning Clarke Centre, Canberra

To find out more information please contact: ATCA Treasurer Alison Hodak on 08 8204 6478 or simply email: alison.hodak@health.sa.gov.au

AUSTRALASIAN TRANSPLANT COORDINATORS ASSOCIATION INC CONFERENCE 2014 Representing Donor and Transplant Coordinators in Australia and New Zealand Proudly Organised and Hosted by the ATCA Executive Committee

TRANSPLANT JOURNAL OF AUSTRALASIA

CO NTE NTS Journal of the Transplant Nurses’ Association Inc.

TNA National Executive report

NATIONAL EXECUTIVE

Editorial Board

President Claire West Tel (02) 9515 7274 Fax (02) 9515 3606 Email president@tna.asn.au

Editorial 3

Secretary Libby John Tel (08) 8204 5819 Fax (08) 8204 6959 Email secretary@tna.asn.au Secretariat Shoma Mittra Tel 0433 558 125 Email secretariat@tna.asn.au Treasurer Julie Pavlovic Tel (03) 9496 3972 Fax (03) 9496 3487 Email treasurer@tna.asn.au Editor Tracey Mackay Email TJAeditor@tna.asn.au ISSN 1323-5109 Published by the Transplant Nurses’ Association Inc. All correspondence to: Shoma Mittra, TNA Secretariat

Guest editorial Consent to organ and tissue donation: considering the ethics

Sandra L Neate

Articles

“This is how it’s got to happen”

Holly Northam, Mary Cruickshank & Gylo Hercelinskyj

The evaluation of the Life Is Cool program: impact on student knowledge, family discussion, and intention to register as organ donors

Gretchen B Macy, M Christine Nagy, John Bonaguro, Gary English, Grace Lartey & Melody Noland

Published by Cambridge Publishing — a division of Cambridge Media

Thank you — how hard is it?

10 Walters Drive Osborne Park, WA 6017 Tel (08) 6314 5222 Fax (08) 6314 5299 Web www.cambridgemedia.com.au

Tracey Mackay

DonateLife 25

Copy Editor Rachel Hoare

Diary dates

Graphic Designer Gordon McDade Disclaimer: Neither the Transplant Nurses’ Association nor the Editorial Board of the TJA assumes responsibility for the opinions expressed by the authors. The description of products and acceptance of advertising does not indicate or imply endorsement by the Association. Our gratitude and special thanks to Novartis Pharmaceuticals Australia Pty Ltd and Jannsen Cilag, all of which support the TNA and its activities.

Transplant Nurses’ Association website:

www.tna.asn.au

JOURNAL SUBMISSION DETAILS FOR 2 0 1 4 For 2014 the Transplant Journal of Australasia (TJA) will be produced in March, July and December. Papers are submitted to the Editorial Board, which provides feedback to the author prior to publishing. All papers will be sub-edited to journal style before publication — please refer to the Guidelines for Authors for more details on this and for detailed submission information.

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TRANSPLANT JOURNAL OF AUSTRALASIA

T N A N AT I O N A L E X E C U T I V E R E P O R T Congratulations to all our members and donation sector colleagues for their efforts in the success of DonateLife Week 2014. Many events have been held across the country with some gaining positive media attention. The Australian Organ and Tissue Authority (AOTA) has also recently released their annual report showing that “in 2013 Australia achieved its highest organ and tissue donation and transplantation outcomes”.

Sponsor. The TNA works closely with AOTA, with representation on various committees and I look forward to this new partnership. If you are aware of any companies or organisations (large or small) that would like to discuss sponsoring the TNA, please contact us. Scholarship applications for 2014 are now open. The closing date is 20 June. Please note that

there is only one scholarship round for this year. Our Perth team is busy organising the next Claire West annual conference, which will be held on 17–18 Have you logged onto the Transplant Library yet? October 2014. The call for abstracts is now open. This is a fantastic resource that is free to TNA members. First-time presenters are encouraged to submit an abstract. The Transplant Library is an online resource, providing highFor further information, visit the website or ‘like’ us on quality, evidence-based information on all aspects of solid Facebook for regular updates. organ transplantation. The Transplant Library is updated The National Executive is busy sourcing sponsorship to assist every two weeks with new randomised controlled trials, and with our finances. We welcome Novartis back as a Gold every four weeks with new systematic reviews. Sponsor for 2014. Novartis has offered ongoing financial support to the TNA and we are extremely appreciative of their If you have any suggestions or questions, please do not support. We are also extremely grateful to AOTA, our Silver hesitate to contact me via email on president@tna.asn.au

2014 TNA scholarship application deadline: 5pm on 20 June 2014 Please note that due to financial constraints there will only be one scholarship round in 2014. All eligible applications will be reviewed on 24 June 2014. Scholarship application forms and submission guidelines can be downloaded from the TNA website www.tna.asn.au Scholarship enquiries can be directed to the TNA National Secretary secretary@tna.asn.au

Editorial Board Michelle Harkess Heart/Lung Transplant Tracey Hughes Liver Transplant Tracey Mackay Nurse Donation Specialist Tracy McConnell-Henry (Previous) Nurse Donation Specialist Nick Nuttall Eye Bank Catherine O’Driscoll CNC, Surgery Myra Sgorbini Donor Coordinator Shoma Mittra TNA Secretariat Bruce Maguire Social worker — Liver Transplant Yaprak Sarigo Liver Transplant Bronwyn Hayes Renal Transplant

Member

NSW

mharkess@stvincents.com.au

Member

VIC

tracey.hughes@austin.org.au

Editor

VIC

TJAeditor@tna.asn.au

Member

VIC

tracy.mcconnell-henry@monash.edu

Member

QLD

nichalas_nuttall@health.qld.gov.au

Member

catherine.o’driscoll@health.wa.gov.au

Member

NSW

myra.sgorbini@sswahs.nsw.gov.au

Secretariat

secretariat@tna.asn.au

Member

Bruce.Maguire@health.wa.gov.au

Member

Turkey

yapraksarigol@gmail.com

Member

QLD

bronwynhayes@aapt.net.au

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TRANSPLANT JOURNAL OF AUSTRALASIA

EDITORIAL In 2009, the Australian Government proposed the necessity to develop and reform our organ and tissue donation practices to save or improve the lives of many Australians suffering endstage organ failure. This reform has been an incremental process over the last four years with the implementation of a national governing system and the development of local, hospital-based clinical practice. The Australian Organ and Tissue Authority (AOTA) investigated and implemented key elements of international experience into the reform framework. The key elements that we have adopted and continue to work effectively with are:

“This is how it is going to happen”, Holly identifies the needs of the potential donor family and the obligations we have as clinicians, to provide the donor family with quality care.

Tracey Mackay

• A legal and ethical framework. • A national coordinating organisation. • Hospital-based clinical donation specialists — medical and nursing. • Specialist training for clinical staff in management of the deceased donation process and family donation conversations. • Implementation of a clinical governance framework that supports quality assurance and audit of hospital clinical practice and governance of the donation process. • Financial support to donor hospitals to ensure that costs related to donor management are not a barrier to donation. • Media engagement and national community awareness campaigns and education. • International cooperation to share best practice. The success of the reform package can be measured by the increase in organ and tissue donation rates. In 2013, 391 organ donors transformed the lives of 1,122 patients with end-stage organ failure. This represents an increase in organ donation rate of 58% since the implementation of the reform package, and when compared with the historical average of 200 donors a year (average of 2000–2008), there has been a 91% increase in organ donations. Organ and tissue donation is integral to the transplant process, so in this edition of the TJA, I would like to indulge my colleagues and inform those colleagues who work on the ‘other side’. Dr Sandra Neate, an emergency physician and medical donation specialist at St Vincent’s Hospital in Melbourne, is currently conducting research into family donation discussions. She has kindly written a guest editorial based on her literature search regarding the world experience of family donation discussions. This is an informative piece and I look forward to reading about her results when the research is completed. Holly Northam has completed a quality research study in which she asked families, who had been required to make a decision about deceased organ donation, about their experience and the factors that contributed to their decision to either agree to or decline organ donation. In her article.

Volume 23 Number 1 – March 2014

In the second article, “The evaluation of the Life Is Cool program: impact on student knowledge, family discussion, and intention to register as organ donors”, Gretchen Macy explains the Life Is Cool program and evaluates its effectiveness in providing education to students about organ function, healthy lifestyle choices, and organ donation opportunities.

Finally, “Thank you — how hard is it?” is a retrospective, quality project that I completed in 2012. Surveys of donor families reveal that not only is it important to them to help others through donation, but the feedback regarding the improvement in quality of life of the recipients and the acknowledgement of the precious gift, is vital. In this article, I have quantified and analysed donor–recipient correspondence to determine the extent of the correspondence gap.

DonateLife Week 2014 The national promotion of DonateLife week was held from 23 February to 2 March 2014. Education and promotional activities were conducted around Australia, with the key message being: “Have the chat that saves lives — ask and know your loved one’s donation decision” Congratulations to all those who have worked tirelessly in the sector to facilitate this promotion! I have provided a photographic collage demonstrating the activities that were undertaken during DonateLife week 2014.

Transplant Games Over eight days in September, Melbourne will host Australian and some international athletes who are competing with the same goal — to celebrate their gift of life. The Transplant Games are a wonderful celebration of transplantation and demonstrate the quality of life that can be obtained after transplant. With more than 21 competitive sports and 10 special events, the 2014 Australian Transplant Games in Melbourne will be the nation’s largest single event promoting organ and tissue donation. But the Games are about much more than competing; they are about promoting the life-saving benefits of organ and tissue donation. Paraphrasing a line from Oliver Stone’s movie Platoon: “Those of us who survive have an obligation to the dead to remember … and, with the remainder of our lives, to bring goodness and meaning to this life”. I hope you enjoy the first edition of the TJA for 2014.

Novartis is very proud to support the Transplant Nurses Association

Long term commitment Designed by .com.au 1422/0414 Novartis Pharmaceuticals Australia Pty Ltd ABN 18 004 244 160 54 Waterloo Road North Ryde NSW 2113 TRA0067, First issued April 2014.

TRANSPLANT JOURNAL OF AUSTRALASIA

GUEST EDITORIAL

Consent to organ and tissue donation: considering the ethics Sandra L Neate Efforts to increase organ and tissue donation in Australia have resulted in increased numbers of deceased organ donors from 11.4 donors per million population (pmp) in 2009 to 16.9 donors pmp in 2013. However, this frequency of donation still falls well below that of approximately 35 donors pmp in countries such as Spain, Croatia and the USA; the rate of family consent to donation is one factor that contributes to this disparity. Currently, approximately 60% of families of donor-eligible patients provide consent to donation in Australia1 and improving this consent rate is an aim for those working and providing education in the sector. Underpinning the request for consent for organ donation are several fundamental ethical principles and considerations. The first is the knowledge of the unmet needs of those on transplantation waiting lists and the professional obligation of clinicians to do their best to assist patients in obtaining the potentially life-saving transplants they require. There is also an ethical obligation to respect the end-of-life wishes of those who want to donate organs, and those who do not, and to ensure the consent process is fully informed and voluntary2. Aspects of potential ethical interest around consent conversations, such as when donation conversations should occur, how the conversation should be conducted and by whom, and the nature and quantity of information that should be provided, have attracted the attention of both educators and ethicists. In the USA attempts were made to increase consent rates by legislation. Required Consent Laws, implemented progressively across the USA from 1984, required health care providers to approach all families of donor-eligible patients. The law was based on the assumption that consent rates would increase due to increased request rates and standardised methods of request, while preserving the individual’s right to refuse3. However, the Required Request legislation resulted in largely unchanged consent rates of around 50%. It was proposed that the laws did not have the desired effect as they disregarded two very important elements of the request process: the manner in which clinicians discussed donation with families and whether families actually had prior knowledge of the donation wishes of their family member4. Subsequently a Routine Notification Policy was adopted, initially legislated in Pennsylvania in 1994, and eventually required for all federally funded health care organisations in the US4. This policy assumed that compulsory notification of all deaths to the local organ procurement organisation (OPO) would lead to the early involvement of OPO requestors trained in donation conversations, and would translate to increased consent to donation. However, this approach was 6

not successful in translating high request rates into increased donation rates4. Siminoff hypothesised that these policies had failed to consider the role of pre-existing attitudes of the public regarding donation and how the request process affected decision outcomes; she stated that “Consideration of how the attitudes of families, patients, and healthcare providers shape the manner in which the subject of organ donation is raised and ultimately decided may better inform future policy efforts”4. Siminoff concluded that the donation request required specialised knowledge and skills to deliver information in a sensitive way appropriate to donor family needs. Following the apparent lack of success of the legislation, the request process has been further examined and has evolved to focus on the ways in which the donation conversation is conducted and by whom, and by a consideration of what motivates families to donate. Most people who consent to donation are motivated both by a knowledge of their loved one’s wishes (enabling families to honour the autonomy of the deceased and fulfil their wishes)5, altruism (that most people, given the opportunity will choose to help others)6 and reciprocity (that families benefit from the donation process and gain consolation from it). The amount and nature of information provided during donation conversations has also raised ethical debate. In the USA the ‘Dual Advocacy’ model is frequently employed. The model is based on the premise that those requesting donation must consider the needs and rights of the donor family to be fully informed6,7. Families are informed of the potential benefits of donation using ‘value-positive’ language that includes the positive impact that donation may have on those awaiting transplantation and on the donor family by the solace derived by families of organ donors7. Truog states that “an ethically valid informed consent process should consist of a balanced discussion of the available options and counseling to help patients or their families reach the choice that is best for them, including the provision of information about the urgent need for organs and the consolation that many families derive from knowing that their loved one was able to help others”2. However, he also notes that requestors whose sole purpose is to obtain consent for donation may be ethically conflicted in these circumstances2. In Australia, intensive care physicians still generally raise organ donation with families. This approach is supported by research that indicates the majority of families wish to be first approached by the treating clinician4. Australian intensive care physicians, in general, support their continued role in donation discussions, but have long recognised the need for training in difficult conversations and introduced the

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Australian Donor Awareness Programme (ADAPT) around 19948. There has, however, been a move in Australia towards the introduction of trained requestors. Currently, the Australian sector is considering and, at times, implementing a collaborative approach where clinicians and trained requestors discuss donation together with families and a clinical trial of this approach is under way in Victoria. Evidence from the US has suggested this method of request is effective9 but UK research found no difference between the collaborative and single physician request10. The Australian Organ and Tissue Authority has developed a Professional Education Package around donation conversations, informed by collaboration with the Gift of Life Institute in Philadelphia. Whilst Australian clinicians have traditionally been comfortable with discussing donation in a ‘neutral’ manner, to avoid perceived coercion, recent education programs have aimed to move towards a ‘balanced approach’, where sufficient information is provided to enable an informed, enduring decision. Information may include the potential benefits of donation to the family and the organ recipients. Black and Forsberg from the UK11 take the debate around consent conversations even further with the suggestion that motivational interviewing (MI) techniques, traditionally employed to change problematic behaviours by decreasing ambivalence and strengthening motivation to change, may be successfully employed to improve consent rates. They propose that MI may help next of kin resolve ambivalence towards donation. Concerns exist regarding whether this amounts to manipulation; however, the authors suggest that, in societies where public support for donation is widespread, the risk of manipulation is low and that, conversely, MI may assist families in making decisions consistent with longstanding values, avoiding the chances of long-term regret regarding non-consent11. First person authorisation (FPA) is the latest US legislation aimed at increasing rates of donation. This legislation enables donation to proceed if the deceased is a previously designated donor via a driver’s licence designation, donor card or relevant donor registry. The legislation is characterised as upholding the person’s autonomy and guaranteeing that their wishes are fulfilled3. Ethical considerations include whether signing onto a donor registry equates to informed consent and whether families may feel FPA removes their ability to make decisions regarding their loved one at the end of life. However, research in the US found that, in the setting of FPA, families had a more positive experience of the donation conversation and process knowing their loved one had previously registered consent, and experienced greater comfort and satisfaction with the donation decision12. Family objections to FPA occur in around 10% of cases and OPOs vary in their response to such objections, with 53% saying they followed the donor’s wishes even in the face of family objection13. As FPA is embedded in US law, the US literature describes the failure to honour the deceased’s

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wishes as unethical13. However, this position of proceeding with donation in the face of family objection may be viewed as contrary to the principle of ‘voluntariness’ where families agree to donation free of coercion and in conformance with the doctrine of informed consent5, depending on how consent is viewed. Since 2000, registration on the Australian Organ Donor Register is considered evidence of consent to donation, and most people believe that it would be wrong to override the wishes of a person registered as ‘yes’ to donation and an Australian editorial examining the ethics of family refusals of registered consent describes objecting families as “surrogate decision makers with double standards”14. Despite this, however, current practice in Australia would be that donation would not proceed against the wishes of the family8. While Australia aims to achieve consent rates approximating 75%, those participating in donation conversations must act within a culturally and personally acceptable ethical framework. Laws and practices of others countries and cultures can be observed, researched, discussed and evaluated in the Australian context. Personal and professional ethics should not be static, rather, practitioners and educators should contemplate their own ethical principles and allow them to evolve, informed by research and experience.

References 1. Australian Organ and Tissue Authority. Australian Organ and Tissue Authority’s 2013 Performance. Canberra, 2014. 2. Truog RD. Consent for Organ Donation — Balancing Conflicting Ethical Obligations. The New England Journal of Medicine 2008; 358(12):1209–1211. 3. Siminoff LA, Agyemang AA & Traino HM. Consent to organ donation: a review. Progress in Transplantation 2013; 23(1):99–104. 4. Siminoff LA & Mercer MB. Public policy, public opinion, and consent for organ donation. Cambridge Quarterly of Healthcare Ethics: CQ: The International Journal of Healthcare Ethics Committees 2001; 10(4):377–386. 5. Siminoff L, Mercer MB, Graham G & Burant C. The reasons families donate organs for transplantation: implications for policy and practice. The Journal of Trauma 2007; 62(4):969–978. 6. Luskin RS, Glazier AK & Delmonico FL. Organ donation and dual advocacy. The New England Journal of Medicine 2008; 358(12):1297– 1298. 7. Mulvania P & Wise C. Dual Advocacy: A value-positive approach for obtaining consent for organ donation: training materials. Philadelphia: Gift of Life Institute, 2011. 8. Potter J & O’Leary MJ. Obtaining consent for cadaveric organ donation in Australia. Internal Medicine Journal 2013; 43(7):737–739. 9. Simpkin AL, Robertson LC, Barber VS & Young JD. Modifiable factors influencing relatives’ decision to offer organ donation: systematic review. British Medical Journal 2009; 338:b991. 10. Acre Trial Collaborators. Effect of “collaborative requesting” on consent rate for organ donation: randomised controlled trial (ACRE trial). British Medical Journal 2009; 339:b3911. 11. Black I & Forsberg L. Would it be ethical to use motivational interviewing to increase family consent to deceased solid organ donation? Journal of Medical Ethics 2014; 40(1):63–68. 12. Traino HM & Siminoff LA. Attitudes and acceptance of First Person Authorization: a national comparison of donor and non-donor families. The Journal of Trauma and Acute Care Surgery 2013; 74(1):294–300. 13. Chon WJ, Josephson MA, Gordon EJ et al. When the living and the deceased cannot agree on organ donation: a survey of US organ procurement organizations (OPOs). American Journal of Transplantation: official journal of the American Society of Transplantation and the American Society of Transplant Surgeons 2014; 14(1):172–177. 14. Bramstedt KA. Family refusals of registered consents: the disruption of organ donation by double-standard surrogate decision-making. Internal Medicine Journal 2013; 43(2):120–123.

Medicine, Miracles and Beyond Transplant Nurses’ Association 23rd National Conference 17-18th October 2014 | Mercure Hotel Irwin Street, Perth, Western Australia

For further information please visit the conference website at www.tna.asn.a Corina Jary on (08)9224 8793 email: corina.jary@health.wa.gov.au or Emily Toohey on (08) 9346 4415 emily. toohey@health.wa.gov.au

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TRANSPLANT JOURNAL OF AUSTRALASIA

ARTICLE

“This is how it’s got to happen” Holly Northam* • RN, RM, MCritCareNurs, MACN, PhD scholar, Assistant Professor in Critical Care Nursing Disciplines of Nursing and Midwifery, Faculty of Health, University of Canberra, Bruce 2601, Australia Tel +61 412 298 295 Email Holly.Northam@canberra.edu.au Mary Cruickshank • RN, PhD, Professor, Head of Disciplines of Nursing and Midwifery Faculty of Health, University of Canberra, Bruce 2601, Australia Gylo Hercelinskyj • RN, PhD, Assistant Professor, Disciplines of Nursing and Midwifery Faculty of Health, University of Canberra, Bruce 2601, Australia * Lead and corresponding author

‘One Stop Shop’ for all Abstract your travel needs Introduction

Organ transplantation is the most effective treatment for end-stage organ failure and is a much sought-after therapy. Efforts are under way to maximise the number of families who agree to organ donation on behalf of a newly deceased relative in Australia, with the hope of easing the burden for dying and incapacitated patients and to reduce health care costs.

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A Quality Service Competitive airfares and accommodation rates Objective A Visa Service Travel Insurance To present initial findings from a study which asked families who had been required to make a deceased organ donation decision about their experience, and the factors that contributed their decision to either agree to or decline organ donation. Travelex Foreign Exchange Cash toPassports Methods Passport Photographs

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Following ethics approval, an exploratory multiple case study was conducted. Twenty-two family members from nine families who had experienced the death of a relative within the previous three years from five of Australia’s state and territories contributed to the study in 17 recorded, transcribed and analysed interviews.

ELLOFindings HELLO Broad themes emerged that included the importance of time and location, perceptions of suffering, information and help for W DAY helloworld Subiaco Central

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the families, and the need for families to assure themselves that the deceased’s needs were addressed before and after death.

Conclusion

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Keywords Organ donation, Australia, experience, consent, decline, transplant, family, brain death, donation after cardiac death, end-oflife care.

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Acknowledgements

Professor

Valerie

Braithwaite,

Introduction

Regulatory Institutions Network, School of Regulation,

The therapeutic benefits of transplantation remain the

Justice and Diplomacy, Collage of Asia and the Pacific. The

greatest and often most elusive hope for patients in end-stage

Australian National University.

organ failure. Many Australians understand this problem

Disclaimer: The authors have no competing interests.

and express a desire to help others upon their deaths by donating their organs. Conversely, the public discourse will

Conduct of this study was approved by the Committee

often focus on the idea that a deceased’s wish to donate may

for Ethics in Human Research, University of Canberra,

be overridden by their relatives at the time of death. Little is

Australia.

known about the experience of making the decision, or of

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the factors that may influence a family to either agree to or decline organ donation in the Australian context.

Time/location

Over the last two and a half years, I (HN) have had the opportunity of conducting research as part of a doctoral study in which I have explored the experience and decisions of Australian families who have made an organ donation decision on behalf of their deceased family member. It has been a great privilege to have been allowed to hear their stories and I feel compelled to ensure I validate their trust by accurately sharing their views. Like most health care professionals involved in the care of patients and their families, the knowledge that we are there to advocate on their behalf when they need our voice weighs heavily on my practice. We would like to share some salient points in the hope that this will assist those who provide care to be alert for occasions when care delivery to patients and their families can be improved or, better still, acknowledged for its excellence.

The location of the event leading to the patient’s death ranged from remote rural locations to major metropolitan areas. The dying patients were in many cases transported from one location to another and some were moved even further, depending on the care available. Their families followed their movements and gathered at the hospitals. Some family members lived nearby, but, for the most part, families often travelled large distances (interstate and internationally) to be with their dying family member. It is clear that location and time has a profound effect on organ donation decisions in the Australian context. The impact of the perception that there would be large delays in enabling the organ donation process influences decisions, with some families believing that the organ donation process would take two to three days and that their relative may have to be flown to another hospital where the surgery would be conducted. This information was an influencing factor in cases of refusals.

Objective

Perception of suffering

This article presents some early findings that are important for the profession and may contribute to patient and family decisions about organ donation. Hopefully this may, in turn, improve outcomes for patients in need of transplantation, families who are negotiating the experience of the death of their relative, and, importantly, give a sense of peace to those who have the privilege of caring for them.

Some families made decisions that were linked to a perception that their loved one was suffering. This was despite the interviewee’s ability to emphasise that they “knew they weren’t suffering”; however, interviewees found it difficult to reconcile that information with visual signs of what they perceived through their senses (smell, sight, touch, sound) as suffering. For example:

This article seeks to reflect the interviewees’ de-identified views and is reliant on my interpretations. The experiences are not generalisable; however, the themes may resonate for other donor families exposed to similar situations. The reason I chose to conduct a qualitative and not quantitative study was in recognition that this is exploratory research and thus enables these people the best opportunity to share their experience of making an organ donation decision, and the factors that influenced their decision.

... and it was absolutely horrific … oh, God … I couldn’t even look at him … the smells.

Method Families across Australia who had made an organ donation decision for a deceased family member in the previous three years were invited to participate in this study. Letters were sent to GPs; fliers and emails were sent to professional organisations; social media, print, radio and television were used to spread the invitation as well as purposive snowballing strategies. This recruitment effort led to 22 individuals from nine families being recruited for the study. Four of the families had declined donation of organs of the deceased, while five families agreed. A face-to-face recorded pilot interview and analysis was performed. Recorded interviews were conducted face-to-face in five of Australia’s states and territories during the period from late 2011 and in 2012. 10

And for another family: ... and he looked, he looked uncomfortable, he looked really, really uncomfortable, … even though I know he wasn’t with it. He just looked really uncomfortable, oh, … and he didn’t look peaceful at all, there was nothing peaceful about the way he looked. Some families made decisions based on their desire to limit suffering. The perception that it would take a long time to arrange the donation of their loved one’s organs contributed to refusals because the families felt the responsibility to protect their loved one from further suffering: It’s pretty obvious that xxx has gone and he’s not going to survive, but I don’t want to see him suffering … The context of the donation decision ranged from donation after brain death (DBD) to donation after cardiorespiratory death (DCD). In one case, confusion was evident when, despite the family’s wish to donate, it appeared that the staff were unaware of the decision until after the opportunity for successful recovery and transplantation of the organs had passed because of cardiac standstill. Volume 23 Number 1 – March 2014

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All the families revealed an overriding need to protect and care for their dying/deceased family member before and after death. Hope1 for a positive donation outcome, a wish to help others and to honour their relative was important to them, but this concept was overridden when any perception of harm to their loved one became evident. Their “deep hope”2 was based on doing the best they could to care for their loved one. Trust3 in the care that was given was essential for this to occur. The family experiences ranged from a case of exemplary care to two cases that were potentially damaging to the family, their supporters as well as to the positive message of hope that organ donation should bring. One example involved a family who had been willing to donate, but found it impossible to agree to organ donation after it was described to them as: xxx said you’d say your goodbyes while the machine is on … and in two … maybe three days time … when everything is ready and everything is prepared ... that it is then … that we take him in … and we’d open him up … and we’d harvest the organs … while the heart is still beating. I am aware that there have been great steps forward in trying to bridge the information and communication deficit that has been present surrounding organ and tissue donation in the Australian context. A continued focus on choosing words carefully (for example, not harvest) is essential. I would like to encourage new and innovative means to engage with health care professionals and the community, to ensure people understand the organ and tissue donation process as a compassionately delivered standard part of end of life care.

How community education and information can help family decision making “This is how it’s got to happen” is a quote that was shared with me by a grieving family who had agreed to donate their brain-dead daughter’s organs. The quote succinctly reveals the culmination of one family’s experience in managing to negotiate their shock and disbelief when told of the process required to enable their daughter to donate her organs: “Oh well, we have to take her away still attached to the machines”, and we all kind of just recoiled and said, “No, no, hang on a minute, you can’t take her away, you know, but ... like not when she’s still breathing, you know”, which was ... in hindsight was completely illogical, but you’re not logical at a time like that, you know. The shock, and saying, “No, that you’re killing her,” you know … Similarly to the other families in this study, this family then worked together within their group to take on board the range of new information they needed to understand, before they could satisfy themselves that they were not harming their daughter by allowing organ donation to proceed.

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Their plea for more community education and information about the organ and tissue donation process is shared by many of the other families that I have interviewed and received calls from over the last few years. The family who made this plea comes from a well-educated demographic and cannot understand why there is not more information available on websites and throughout health care information channels. Despite the reform efforts, this information gap remains one of the biggest impediments to community trust in deceased donation practices. The themes that I have identified in this study give credence to the importance of the work that is being done to educate our health care professionals and public in a transparent way about the time, processes and care required for the process of organ donation to take place. Previous documentaries such as The Gift generated an immediate community response and the donation rate rose, coinciding with the period when the series aired and contributed to the dissemination of organ donation information. “This is how it happens” also becomes an excellent metaphor for how our organisational activities and governance needs so frequently supersede and obscure the clear voice of our patients and their families, thus potentially leading to a loss of trust, individual disempowerment and an inability to achieve hoped-for goals. In the case of organ donation, consent is given, most often in the hope to honour a deceased loved one’s desire to help others, or to bring ‘something good’ out of the situation.

Discussion Australian organ donation and transplantation activity continued to increase in 2013; however, the impressive rise in donation rates noted at the beginning of the year were not sustained as the year drifted on4. For those 1532 patients who meet the criteria for the waiting list5, who could benefit from transplantation, the wait remains heartbreakingly slow. Australian health care professionals and consumer groups continue to push for improved patient outcomes, with recently released Australian organ donation data revealing that 391 Australians donated their organs in 2013, benefiting 1122 patients in need of transplantation4. By the end of 2013, there were almost 6 million Australians who had provided documentary evidence of their intent and consent to donate their organs as listed on the Australian Organ Donor Register6. This equates to just over a quarter of our population, and when you remove those who do not have the capacity to document their decision (children and the infirm) it becomes closer to half of the population. In principle, this is great news, it shows how many of our community feel confident to trust our organ and tissue processes and care of their bodies following their deaths. However, this trust emphasises the reciprocal responsibility 11

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that rests with those who set the expectations of the community, and for those who care for dying patients. This is particularly so when we know that many staff in our hospitals remain unclear about their role when providing end-of-life care across the range of locations where people die, specifically in cases where organ donation is a possibility7. The problem is evidenced in the consultation paper that has been released by the Commonwealth8, which seeks health professional input into end-of-life care in acute hospitals but doesn’t include any mention of deceased organ and tissue donation. Successful deceased organ and tissue donation outcomes are intricately entwined with the realisation and confirmation of death, and yet many of our doctors and nurses across the range of health care facilities remain unfamiliar with how best to provide patient- and family-focused end-of-life care7,9,10. Consistency in practice on the determination of death, and a universal definition of death that meets international acceptance also remains elusive11. Disseminating this education remains a priority area for those in organ donation and transplantation roles, particularly in areas where there are high levels of staff turnover, and difficult to access staff. End-of-life care and the practice of organ and tissue donation should be seen as a standard part of health care and not an ‘optional extra’. It is not surprising that families who have been faced with what they thought was a simple decision based on an altruistic desire to help others, become shocked and confused by the processes that become evident as they travel the donation pathway. Staff who are skilled and knowledgeable, and who have the emotional intelligence to support the families at this time, provide hope to these families that someone who cares about them and their loved one will guide them through the labyrinth of grief, fatigue, thirst, time and desire to protect their loved one from further harm. In Australia, we have some staff who do this extraordinarily well; they predominantly tend to be experienced nurses and some doctors who make the time to create a patient (person)centred relationship which recognises the families’ needs. In the words of one grateful family member, reflecting the qualities of the nurse who cared for her husband: ... she was kind and warm and … I felt okay about that … I think you’ve got to be a pretty special person to be an intensive care nurse. Sadly though, my findings suggest that the process of ‘tickbox’ governance means that some families who have agreed to donation may be confronted with additional trauma as staff struggle through a complex process, following a regulation ‘check’ sheet. The ‘shopping list’ whereby donor coordinators are required to gain consent from families by individually naming and signing off each organ, tissue, blood

and any ‘product’ held within the deceased patient’s body, for the purpose of ‘informed consent’ remains an ethically challenging exercise and has the potential to ‘do harm’ by creating further emotional and psychological trauma for the family members involved. Examples of interviewee comments on this problem include: Well, like I said before, and what Dad said, it was like xxx was a bag of organs rather than a person. And in a different case: Those people in the hospital … in their manner … in their matter of factness … you know … I felt … that you just take him off and he … he becomes a commodity … you know, the difference between a human … and you know … and then he’s a commodity ... and oh ... yes, well ... Like magpies, crows or something … and we’ll have this and we’ll have that … etcetera … but sure … I guess that’s what happens but … This view is reflected across several cases, the literature12 and other consumer feedback. A clear recommendation from this study is that a sensitive analysis of family needs, including their most basic needs of food, water, information and proximity to their relative, is fundamental in supporting a family as they come to a decision. This should be coupled with excellent patient care, which demonstrates to the family that someone cares about their loved one, that they are clean, and look comfortable. In the words of one interviewee, who describes seeing his newly deceased wife: I met the doc, and he took me in and she looked … beautiful …

Conclusion In conclusion, it is not uncommon to hear the community ‘conversation’ to call for presumed consent legislation to remove the need for families to agree to a prior consent to donation. I posit that until families are able to witness health care professionals providing compassionate patient- and family-focused end-of-life care and donation processes, to a public who can have transparent information about the processes involved in donation, that presumed consent will undermine our social capital and community trust in organ and tissue donation. This is best reflected by this interviewee: I want professionals to tell me the information, but I think the thing is ... that for me the bottom line is the hospital bedside is not the place to find it out; you need to know before then. You know if I’d read it a year before, years before when I first got my licence or something, I would have assimilated that, and I would have known that’s how it happens.

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Whether the principle at work here is reciprocity or just basic

Ranse K, Yates P & Coyer F. End-of-life care in the intensive care setting: A descriptive exploratory qualitative study of nurses’ beliefs and practices. Australian Critical Care 2012 Feb; 25(1):4–12.

Australian Commission on Safety, Quality and Healthcare. End-of-life care in acute hospitals. A background paper. 2014 [cited 20 February 2014]. Available from: http://www. safetyandquality.gov.au/wp-content/uploads/2013/09/SAQ083_ End_of_life_care_V15_FILM_REVISED_TAGGED.pdf

Australian Doctor. Hospitals urged to improve end-of-life care [Internet] 2014. 13 February; [cited 20 February 2014]. Available from: http://www.australiandoctor.com.au/news/ latest-news/hospitals-urged-to-improve-end-of-life-care

respect, families dealing with grief and loss deserve to know and feel assured that their loved one is valued and cared for in life and death.

References 1.

Snyder CR. Hope Theory: Rainbows in the mind. Psychological Inquiry 2002; 13(4):249–275.

Coulehan J. Deep hope: A song without words. Theoretical Medical Bioethics 2011;32:143–160. DOI: 10.1007/s11017011-9172-2.

Job J. Ripples of trust [PhD thesis]. Canberra, ACT. Australian National University, 2007.

Australia and New Zealand Organ Donation Registry. Monthly Report on Deceased Organ Donation in Australia [internet]. 2014 [cited 20 February 2014]. Available from: http://www. anzdata.org.au/anzod/updates/anzod2014summary.pdf

Australia and New Zealand Organ Donation Registry. Waiting List Data, Waiting list [internet]. 2014 [cited 20 February 2014]. Available from: http://www.anzdata.org.au/anzod/v1/ waitinglist2014.html

Australian Organ Donor Registry. AODR Statistics [internet] 2014 [cited 20 February 2014]. Available from: http://www. medicareaustralia.gov.au/provider/patients/aodr/stats.jsp

10. Le B & Watt J. Care of the Dying in Australia’s Busiest Hospital: Benefits of Palliative Care Consultation and Methods to Enhance Access. Journal of Palliative Medicine 2010. 13(10):855–860. Available from: http://online.liebertpub.com/ doi/abs/10.1089/jpm.2009.0339?journalCode=jpm 11. Rady M, Verheijde J & McGregor J. Scientific, legal and ethical challenges of end-of-life organ procurement in emergency medicine. Resuscitation 2010; 81:1069–1078. 12. Thomas S, Milnes S & Komesarof P. Understanding organ donation in the collaborative era: a qualitative study of staff and family experiences. Internal Medicine Journal 2009 6 June; (39):588–594.

TRANSPLANT LIBRARY AVAILABLE ONLINE TO ALL TNA MEMBERS NOW! What is the Transplant Library? The Transplant Library is an online resource providing high-quality, evidence-based information on all aspects of solid organ transplantation. The Transplant Library is updated every two weeks with new randomised controlled trials (RCTs) and every four weeks with new systematic reviews. Why should I access the Transplant Library? • Includes all RCTs, including congress abstracts. • Provides access to selected, good-quality systematic reviews. • RCTs published from 2004 have been given a methodological quality rating. • Selected RCTs have been reviewed by the Centre for Evidence in Transplantation (CET). • Main conclusions written by experts from the CET. • Trial registration information. • Direct access to free full-text articles. • All RCTs in solid organ transplantation. • Over 8,000 RCTs from 1970 (earliest record) to present. • Including over 4,000 congress abstracts. • Selected good-quality systematic reviews and meta-analyses from 2008 (over 315). • Includes records that are electronically published ahead of print updates. How do I access the Transplant Library? It’s easy! TNA members simply need to go to the TNA website www.tna.asn.au and log on with their email address and password. There is a Transplant Library direct link on the home page, or you can go to the “documents and resource” tab and click on “members links”. This will take you straight into the Transplant Library database … no need for any further user names or passwords. A Transplant Library search guide is also available on the TNA website “documents and resource” page.

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Have you had the chat that saves lives?

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Make time to have the chat that saves lives. Ask and know your loved onesâ&#x20AC;&#x2122; organ and tissue donation decision.

Discover the facts. Decide and register on the Australian Organ Donor Register. Most importantly, Discuss your donation decision with loved ones.

donatelife.gov.au

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ARTICLE

The evaluation of the Life Is Cool program: impact on student knowledge, family discussion, and intention to register as organ donors Gretchen B Macy* • EdD, MPH, CSCS, Assistant Professor Western Kentucky University, 1906 College Heights Blvd, #11082, Bowling Green, KY 42101, USA Tel (270) 745 5870 Fax (270) 745 4437 Email gretchen.macy@wku.edu M Christine Nagy • PhD, Associate Professor (Retired) Western Kentucky University, 1906 College Heights Blvd, #11082, Bowling Green, KY 42101, USA Email chris.nagy@wku.edu John Bonaguro • PhD, Dean of the College of Health and Human Services Western Kentucky University, 1906 College Heights Blvd, #11082, Bowling Green, KY 42101, USA Tel (270) 745 7003 Fax (270) 745 7073 Email john.bonaguro@wku.edu Gary English • PhD, CHES, Head of Department of Public Health Western Kentucky University, 1906 College Heights Blvd, #11082, Bowling Green, KY 42101, USA Tel (270) 745 2678 Fax (270) 745 4437 Email gary.english@wku.edu Grace Lartey • PhD, Associate Professor Western Kentucky University, 1906 College Heights Blvd, #11082, Bowling Green, KY 42101, USA Tel (270) 745 3941 Fax (270) 745 4437 Email grace.lartey@wku.edu Melody Noland • PhD, Professor University of Kentucky, 102 Seaton Center, Lexington, KY 40506, USA Tel (859) 257 5826 Fax (859) 323 1090 Email melody.noland@uky.edu * Corresponding author

Abstract Background: The Life Is Cool program educates students about organ function, healthy lifestyle choices, and organ donation opportunities. The purpose of this study was to evaluate the impact of the Life Is Cool curriculum on student knowledge, family discussion, and intention to register as an organ donor in the future. Methods: Elementary school students (n=402) from two schools participated in the study. One school received the educational program while the second school served as a non-intervention comparison group. Results: Independent t-test comparisons identified that the Life Is Cool program significantly improved mean scores on knowledge of healthy lifestyle (p=0.000) and knowledge of organ and tissue donation (p=0.000) compared to students in the non-intervention comparison group. Chi-square analysis identified significant differences in the proportion of students who received the curriculum that reported having a family discussion about organ donation (p=0.000) and their intention to register as organ donors in the future compared to the comparison group (p=0.000). Conclusions: The Life Is Cool curriculum shows promise for increasing knowledge of healthy lifestyle choices and organ donation, as well as increasing the likelihood of a family discussion and student intention to register as organ donors in the future.

Acknowledgements We would like to thank Kentucky Organ Donor Affiliates (KODA), especially Jenny Miller Jones and Charlotte Wong, for their support throughout this project. The project was supported by a grant from KODA. Cooperation from Jefferson

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County Public Schools and Bowling Green City Schools was imperative to the completion of this project. Additionally, we offer special thanks to Potter Gray Elementary School and Mrs Nita Cole who made the pilot project possible. 15

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Introduction In the United States, the need for donated organs and tissues far outweighs the supply. Many more people need organ transplants than there are available organs for transplantation1. As of January 2012, there were over 122,000 people on the waiting list for organ donations in the United States2. There are approximately 7,000 registered donors in the United States2. It has been estimated that 18 people die waiting for an organ transplant every day2. In 2003, approximately 2,500 of the 83,000 individuals on the waiting list were children under the age of 18 years3. In the same year, there were nearly 25,000 organ transplantations, of which 7% were children3. In 2003, there were 6,455 deceased organ donors and 14% were children3. Due to the shortage of donated organs and the low number of registered donors, the Department of Health and Human Services challenged researchers to create innovative programs to raise donor registration rates4. Additionally, Donate Life America, a national not-for-profit alliance of organisations, whose goal is to increase organ and tissue donation, issued a campaign to register 20 million new donors in 20125. Hence, the need for programs aimed at raising donor registration rates is well recognised. The Life is Cool program was established in Kentucky in 2007 and administered by the Donate Life Kentucky Coalition (a state-level partner of Donate Life America) and community volunteers. Kentucky Organ Donor Affiliates (KODA) developed the curriculum for the program by modifying materials used with a similar program in Indiana. Life is Cool is an educational program developed for upper elementary students. The classroom curriculum contains lessons which address the following areas: healthy organs, healthy tissues, nutrition and physical activity, and introduces students to the practice of organ and tissue donation as well as stating the need for additional registered donors. Following the completion of the classroom curriculum, students participate in a culminating event where they have the opportunity to apply the classroom curriculum through interactive learning. During the event, parents or community volunteers lead small groups (8–10 students per group) through learning stations. The station activities include: observation and tactile learning with porcine organs (liver, heart, lungs and kidney) to gain a better understanding of organ anatomy and physiology; stethoscope utilisation to observe the impact of physical activity on heart rate, demonstration of the kidney filtration and the impact of sodium on filtration efficiency; utilisation of special eyeglasses that simulate vision problems associated with corneal defects; visual representations of the amount of fat contained in common foods and fat’s impact on the cardiovascular system; and the “Donor Vest”, worn by an organ recipient or a family member of an organ donor, which includes cloth models of “donatable” organs. As students correctly identify the “donatable” organ, the cloth model of the organ is removed from the vest and handed to the student. The culminating experience reinforces information taught as part of the classroom curriculum.

Research literature showed that individuals were more likely to register as an organ donor if they had an increased knowledge of organ and tissue donation and had a family discussion about donation1,6-9. Additionally, research indicated that the use of interactive workbooks was an effective way to increase parental participation as well as relay information from child to parent10,11. The Life Is Cool program attempts to increase student knowledge about organ and tissue donation. The program also aims to increase the likelihood of a family discussion about organ donation by providing opportunities for students to act as a way to channel of information to their parents and guardians. This study aimed to answer the following research questions: • Did the Life Is Cool curriculum have an impact on general knowledge scores of students related to organ function, tissue function, nutrition, and physical activity compared to a non-intervention comparison group? • Did the Life Is Cool curriculum have an impact on specific knowledge scores of students regarding organ and tissue donation when compared to students in a non-intervention comparison group? • Were students exposed to the revised Life Is Cool curriculum more likely to have a family discussion about organ donation at post-test compared to students who received the original curriculum or the nonintervention comparison group? • Did the Life Is Cool curriculum have an impact on student intentions to register as an organ donor when compared to students in the non-intervention comparison group? The purpose of this study was to evaluate the impact of the Life Is Cool curriculum on student knowledge about healthy organs and tissues, nutrition, and physical activity; student knowledge regarding organ and tissue donation; family discussion regarding organ donation; and student intentions of registering as an organ donor in the future.

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Methods Participants Two urban elementary schools in Kentucky were chosen as a convenience sample for the study. A total of 178 students completed the pre-test survey; all were from the intervention school. The sample included girls (n=80; 45%) and boys (n=98; 55%) between the ages of 8 to 12, in the fourth (n=100; 56%) and fifth (n=78; 44%) grades. More than half the students (n=105; 59%) were from minority ethnic groups. A significance criterion for all analyses was set at the 95% confidence interval. Demographics of the participants at pre-test are shown in Table 1.

The reading level for the portion of the survey measuring general knowledge on organ and tissue function, nutrition, and physical activity on the Flesch-Kincaid scale was a 1.2 and should have been easily read by 7 to 8-year-olds17. The reading level for a portion of the survey measuring factors related to organ and tissue donation on the Flesch-Kincaid scale was a 4.1 and should have been easily read by 10 to11year-olds17. The instrument was reviewed by experts in the fields of anatomy and physiology, school health, and organ/ tissue procurement and had established face validity. Table 2: Profile of student demographic information by school at post-test (n=403)

Variables

Table 1: Profile of student demographic information by school at pre-test (n=178)

Variables

Intervention school (n=178) n (%a) 80 (44.9)

Male

98 (55.1) 30 (16.9)

98 (55)

44 (24.7)

6 (3.4) 100 (56.2)

5th

78 (43.8) 73 (41)

African-American

48 (27)

Hispanic

32 (18)

Asian

4 (2.2)

Other

21 (11.8)

Indicates percentage within school. *p<0.05.

125 (55.6)

98 (55.1)

100 (49.1)

28 (15.8)

26 (11.6)

92 (51.7)

100 (44.4)

52 (29.2)

94 (41.8)

6 (3.4)

5 (2.2)

4th

98 (55.1)

98 (143.6)

5th

80 (44.8)

127 (56.4)

White/Caucasian

70 (39.3)

125 (55.6)

African-American

49 (27.5)

73 (32.4)

Hispanic

28 (15.7)

9 (4)

Asian

6 (3.4)

6 (2.7)

Other

25 (14)

12 (5.3)

Race*

Race* White/Caucasian

80 (44.9)

Male

Grade in school

Grade in school 4th

Female Age

Age 9

Control school (n=225) n (%a)

Sex

Sex Female

Intervention school (n=178) n (%a)

Indicates percentage within school. *p<0.05.

A total of 403 fourth and fifth grade students from two urban elementary schools in Kentucky took part in the post assessment. This included 178 from the intervention school and 225 from the non-intervention comparison school. The participating sample included girls (n=205; 51%) and boys (n=198; 49%) between the ages of 8 and 12, in the fourth (n=196; 49%) and fifth (n=207; 51%) grades. More than half the students (n=208; 51%) were from minority ethnic groups. Demographics of the participants at post-test are shown in Table 2. Instrument The student survey was a 55-item inventory modified from existing instruments6,7,9,12-16. The survey consisted of multiple choice, true/false, yes/no responses as well as Likert scale items. The last item asked, “Has one of your parents signed up to be an organ donor?”

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Procedure After receiving approval from the university Institutional Review Board (IRB) and Jefferson County School Board, the study was conducted. Schools in Jefferson County who had expressed interest in receiving the educational curriculum were contacted by KODA to take part in the study. Packets were sent home in students’ weekly work folders. The packets to parents explained the program and provided the option to return a form if they did not wish for their student to participate. Student consent was obtained prior to taking part in the evaluation. Students at the intervention school completed a pen and paper pre-test assessment one-week prior to beginning the curriculum. They then received instruction from their regular classroom teacher on the curriculum — one hour per week for five-weeks, leading to the culminating event. Previous to teaching the curriculum, participating classroom teachers attended a 30–45 minute training administered by KODA 17

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personnel to familiarise the teachers with the Life Is Cool program materials. The students in the intervention group then completed the post-test assessment within one school day of completing the curriculum. Students at the comparison school were administered the one-time assessment during the same week that the students in the intervention group took part in the post-test assessment. Regular classroom teachers administered all assessments during normal school hours. Data analysis The data was analysed using Predictive Analytics Software (PASW) Statistical Package 18.0 for the Social Sciences. Chi-square analysis was used to compare student demographic characteristics by school at postassessment. Scales were created for general knowledge (organ and tissue function, nutrition, and physical activity) and knowledge specific to organ donation. After the scales were created, Cronbach’s Alpha analysis measured scale reliability and indicated if any items needed to be removed. Mean scores (post-test mean scores for the intervention school and one-time assessment scores for the comparison school) on each scale were then compared using independent t-test analysis to determine differences between the groups. Independent t-tests were used to compare mean scores at pre-test to mean scores at post-test, on each scale for the intervention school to see if there were changes over time. The response to one item assessed whether the student had taken part in a family discussion, “I have spoken to a family member about organ donation”. The proportion of students within each school answering “yes” or “no” at post-test were compared using chi-square analysis. One item was used to determine intention to register as an organ donor in the future among students, “When I am older, I plan to sign up to be an organ donor.” The proportion of students within each school answering “yes” or “no” at post-test were compared using chi-square analysis.

a significant difference was found on race (χ2=34.801; p=0.001). With respect to race, the comparison school had a larger proportion of white students while the intervention school had a larger proportion of minority students, with a greater representation of Hispanic students. Again, Table 2 presents a profile of student demographic information by school at post-test. Cronbach’s alpha analyses were conducted on general knowledge (alpha=.668) and specific knowledge scales (alpha=.402) to determine scale reliability. Following the intervention, results of independent sample t-tests showed that there were significant differences between the two groups at post-assessment on general knowledge regarding organ and tissue function, nutrition, and physical activity (t=11.406; p=0.000) and knowledge specific to organ donation (t=5.178; p=0.000). Independent t-tests were also run on each of the subscales included in general knowledge. For knowledge of organ and tissue function, results showed a significant difference between the control and intervention groups (t=13.986; p=0.000). Results also showed significant differences between the groups on the nutrition subscale (t=3.545; p=0.000) and the physical activity subscale (t=2.957; p=0.000). Table 3 shows the scores on general knowledge and knowledge specific to organ donation. Results of chi-square analyses indicated that there were significant differences between the two groups on family discussion regarding organ donation (χ2=16.515; p=0.000) and intention to register as an organ donor in the future (χ2=20.353; p=0.000) when comparing the intervention group at post-test to the comparison group’s one-time assessment. Table 4 includes the proportions of students according to family discussion. Table 5 includes the proportions of students according to intention to register as an organ donor in the future. Table 3: Mean scores on student general knowledge and student-specific knowledge of organ donation by school

Intervention school

Results Chi-square analysis was used to compare the proportion of students on each demographic characteristic by each school at post-test. There were no differences in the proportion of students based on gender, grade in school, or age of student between the two schools. However,

General knowledge

Mean

Pre-test

10.08

178

Post-test

13.80*

Knowledge of organ donation

Comparison school Mean

177

10.52*

225

Mean

Pre-test

8.76

178

Post-test

9.59*

177

8.65*

225

Note: The first mean score reflects general knowledge according to the Student General Knowledge Scale, which ranged from 0 to 20. The second mean score reflects specific knowledge of organ donation according to the student-specific knowledge of organ donation, which ranged from 0 to 13. *p<0.05.

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Additionally, independent sample t-tests were used to compare the intervention group at pre-test and post-test to observe change over time. Mean general knowledge scores for students who received the Life Is Cool curriculum showed a significant increase of 3.62 correct responses from pre- to post-assessment (t=12.150, p=0.000). Mean scores of the students in the intervention group on knowledge specific to organ donation showed a significant increase of 0.83 correct responses from pre- to postassessment (t=4.561, p=0.000). The proportion of students who indicated that they had talked to a family member about organ donation at pre-test to post-test went from 15.7% to 36.2% (Ď&#x2021;2=19.290; p=0.000) at the intervention school. Analysis showed that among those students at the intervention school who indicated that they intended to register as a donor when they were older, the proportion of students went from 28.1% to 44.3% (Ď&#x2021;2=10.242; p=0.002) from pre-test to post-test. Table 4: Proportion of students by school and family discussion about organ donation at pre-test and post-test

Variables

Intervention school n (%a)

Comparison school n (%a)

Discussion This study examined the impact of the Life Is Cool curriculum on student knowledge of organ and tissue function, nutrition, and physical activity; student knowledge regarding organ and tissue donation; family discussion regarding organ donation; and intention to register as an organ donor in the future. It was hypothesised that students in the intervention group that were exposed to the Life Is Cool curriculum would have higher scores on general knowledge and knowledge specific to organ donation. It was also hypothesised that students who were taught the curriculum would be more likely to have family discussions about organ donation and intend to register as organ donors in the future, when compared to students in the no treatment control group. There were no differences between the intervention and comparison schools in the proportion of students based on gender, grade in school, or age of student. However, there was a larger proportion of minority students in the intervention group (61%) than the comparison group (44%). This could have potentially impacted the results of the study because research showed that minority groups

Had family discussion about organ donation at pre-test (n=178)

were less likely than whites to register as organ donors9,12,16,19. Therefore, it is possible, that students at the intervention

Yes

28(15.7)

school who were among racial minorities were less likely

150(84.3)

to declare intent to register as organ donors in the future. Further research is needed to understand how racial

Had family discussion about organ donation at post-test (n=403)

differences between the groups may have impacted the results of this study.

Yes

64(36.2)*

41(18.2)*

113(63.8)

184(81.8)

Our findings showed that students receiving Life Is Cool curriculum scored higher on general knowledge of organ and

Note. Table indicates students who reported having a family discussion about organ donation at pre-test and post-test. a Indicates percentage within school. *p > 0.05.

tissue function, nutrition and physical activity. Our findings

Table 5: Proportion of students by school and intention to register at pre-test and post-test

those in the comparison group. There was also a significant

Variables

Intervention school n (%a)

Comparison school n (%a)

Intention to register at pre-test (n=178)

also showed that students who were taught the curriculum scored higher on specific knowledge of organ donation than difference on mean scores for specific knowledge of organ donation from pre-test to post-test for the intervention group. Once again, this indicates that students receiving the Life Is Cool curriculum knew significantly more about organ donation on average than students in the comparison group. The proportion of students at the intervention school who

Yes

50 (28.1)

reported having a family discussion about organ donation

128 (71.9)

at post-test was significantly higher compared to the nonintervention comparison group. Intervention students were

Intention to register at post-test (n=403)

also significantly more likely to report having had a family

Yes

77 (44.4)*

51 (22.7)*

discussion about organ donation at post-test compared to

97 (55.7)

174 (77.3)

pre-test. This is important because research has shown that

Note. Table indicates student intentions to register as an organ donor based on answer to one item at both pre-test and post-test. a Indicates percentage within school. *p > 0.05.

Volume 23 Number 1 â&#x20AC;&#x201C; March 2014

increasing knowledge about organ donation and having a family discussion about organ donation are the strongest positive predictors of intention to register as an organ donor6,7.8,16,18. 19

TRANSPLANT JOURNAL OF AUSTRALASIA

Limitations

References

The evaluation was limited to two urban elementary schools in Kentucky. Data collected from these urban schools may not be generalisable to other areas. Therefore, external reliability remains a concern. Data collection tools relied on selfreporting. Participants may not have been truthful when answering survey items and this could have impacted the results of the evaluation.

Ryckman RM, Van den Borne B, Thornton B & Gold JA. Values priorities and organ donation in young adults. Journal of Applied Social Psychology 2005; 35(11):2421–2435.

Health Resources and Services Administration and Organ Procurement and Transplantation Network. Data reports. Available at: http://optn.transplant.hrsa.gov/latestData/rptData. asp. Accessed 16 October 2011.

Harmon WE, McDonald RA, Reyes JD, Bridges ND, Sweet SC, Sommers CM & Guidinger MK. Pediatric transplantation, 1994–2003. American Journal of Transplantation 2005; 5(suppl2):887–903.

Burdick J. Organ Donation: Utilizing Public Policy and Technology to Strengthen Organ Donor Programs. Available at: www.hhs.gov. Accessed 21 October 2011.

Donate Life America. Available at: http://www.donatelife.net. Accessed 10 October 2011.

Reubsaet A, Brug J, De Vet E & Van den Borne B. The effects of practicing registration of organ donation preference on self-efficacy and registration intention: an enactive mastery experience. Psychology & Health 2005; 18(5):585–594.

Ryckman RM, Gold JA, Reubsaet A & Van den Borne B. Value priorities and intention to register for posthumous organ donation in dutch adolescents. Journal of Social Psychology 2009; 149(2):213–227.

Sirois BC, Sears SF & Marhefka S. Do new drivers equal new donors? An examination of factors influencing organ donation attitudes and behaviors in adolescents. Journal of Behavioural Medicine 2005; 28(2):201–212.

Spigner C, Weaver M, Cardenas V & Allen M. Organ donation and transplantation: ethnic differences in knowledge and opinions among urban high school students. Ethnic Health 2002; 7(2):87–101.

The survey instruments used were modelled on several tools used previously that were validated among adolescent and adult populations6,7,9,12-16. The specific survey instrument was used for the first time with fourth and fifth grade students during this project. Face validity was established through expert review. To further increase the validity of the tool, it was field tested with roughly 100 fourth and fifth grade students; however, the reliability and validity are not yet well established. Another limitation of the study is that students who received the curriculum are unable to register as organ donors due to age restrictions. Further research is needed to determine the long-term impact of the curriculum. Longterm follow-up could determine if those students who received the Life Is Cool program are still more likely to register as organ donors when they are eligible and help determine if the curriculum has a positive impact on donor registration rates.

Conclusion The need for creative and effective ways to increase organ donor registration rates remains a priority. As growing numbers of people are diagnosed with chronic diseases that impact organ function, it is anticipated that the need for donated organs will continue to outpace the supply. Therefore, research in this area is necessary. The Life Is Cool curriculum is a creative way to educate elementary age students about organ donation while teaching them how to make lifestyle choices that promote organ health. Based on the findings of this evaluation, the Life Is Cool curriculum shows promise for increasing knowledge about healthy lifestyle and organ donation, prompting family discussion about organ donation, and increasing the intention that students will register as organ donors in the future. Although the results are promising, further research is needed to substantiate the use of the Life Is Cool curriculum for increasing donor registration rates. Additional work is needed to increase parent/guardian involvement and awareness of organ and tissue donation. Since the materials contained in the curriculum may be seen as sensitive, exploration is needed to find ways to get schools to embrace the curriculum and buy-in to having Life Is Cool taught in their classrooms.

10. Blom-Hoffman J, Wilcox KR, Dunn L, Leff SS & Power TJ. Family involvement in school-based health promotion: bringing nutrition information home. School Psychology Review 2008; 37(4):567–577. 11. Garcia-Dominic O, Wray LA, Trevino RP, Heranandez AE, Yan Z & Ulbrecht JS. Identifying barriers that hinder onsite parental involvement in a school-based health promotion program. Health Promotion Practice 2010; 11:703–713. 12. Cardenas V, Thornton J, Wong KA, Spigner C & Allen MD. Effects of classroom education on knowledge and attitudes regarding organ donation in ethnically diverse urban high schools. Clinical Transplantation 2010; 24(6):784–793. 13. Hyde MK & White KM. Student and community perceptions about organ donors, non-donors and transplant recipients. Journal of Community & Applied Social Psychology 2009; 19:125–141. 14. Morgan SE & Miller JK. Beyond the organ donor card: the effect of knowledge, attitudes, and values on willingness to communicate about organ donation to family members. Health Communication 2001; 14(1):121–134. 15. Rumsey S, Hurford DP & Cole AK. Influence of knowledge and religiousness on attitudes toward organ donation. Transplantation Proceedings 2003; 35(8):2845–2850. 16. Weaver M, Spigner C, Kimi MP, Rabun G & Allen MD. Knowledge and opinions about organ donation among urban high school students: pilot test of a health education program. Clinical Transplantation 2000; 14:292–303. 17. The Readability Test Tool. Available at: http://www.read-able. com. Accessed 22 November 2011.

Human subjects approval statement

18. Afifi WM. Examining the decision to talk with family about organ donation: applying the theory of motivated information management. Communication Monographs 2006; 73:188–215.

The study protocol was approved by the Western Kentucky University Institutional Review Board and the Jefferson County School Board.

19. McNamara P, Guadagnoli E, Evanisko MJ, Beasley C, SantiagoDelpin EA, Callender CO & Christiansen E. Correlates of support for organ donation among three ethnic groups. Clinical Transplantation 1999; 13:45–50.

Volume 23 Number 1 – March 2014

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ARTICLE

Thank you — how hard is it? Tracey Mackay • RN, MsN Nurse Donation Specialist, Royal Melbourne Hospital, VIC, Australia

Abstract The analogy of ‘gift giving’ and organ donation was first suggested at the beginning of the transplant era1. Policy makers, legislators and health professionals promoted voluntary organ donation as the preferred option for obtaining organs for transplant1. In society, the idea of organ donation as gift giving has features that are morally acceptable — it is voluntary and altruistic. Altruism is overwhelmingly the most important motivating factor that contributes to a family’s decision to consent for organ donation. They want someone to benefit — to save a life or improve the quality of a life and for it to be directly attributable to the loss of their loved one. Surveys of donor families reveal that not only is it important to them to help others through donation, but the feedback regarding the progress and improvement in quality of life of the recipients and the acknowledgement of the precious gift, is vital2. Anecdotal information acknowledges how inspirational and powerful correspondence is to donor families. Although routine information given by donor agencies provides abstract statements regarding generic benefits to the recipient, specific information remains elusive. Personal communication through recipient letters enhances the sense of comfort derived from the altruism of the donation experience. In 1997, Vajentic estimated that recipients usually write approximately two years post transplant2, thus the focus of data collection for this qualitative research was 2010. An audit of recipient correspondence in Victoria for 2010 revealed only 58% of donor families received a letter. Organ donation agencies and transplant units should collaborate and unify, to create awareness and a desire for the recipients to voluntarily correspond with their donor family — through the identification of barriers or limitations, development and implementation of detailed guidelines, workshops or individual assistance when writing.

Introduction

This feedback serves to affirm the family’s altruistic decision

Upon receiving a gift, a birthday present or a service, an automatic and courteous response is to say ‘Thank you’. It was probably one of the first words your parents taught you. Saying the words ‘Thank you’ has been a socially acceptable norm for thousands of years.

to donate has saved or improved the lives of others. It assigns meaning to the donation. In a retrospective quality project supported by the Royal Melbourne Hospital and Australian Red Cross Blood Service3 research ethics committees, donor–recipient correspondence

Organ donation is often referred to as ‘the gift of life’ — which can be literally the case when a person requires an organ transplant and not receiving this could be fatal1.

(2010) was quantified and analysed to determine the extent

Although no specific studies have been undertaken to quantify the benefit of donor families receiving correspondence, enough anecdotal evidence is available in the transplant and donation sectors to acknowledge how inspirational and powerful correspondence is in providing effective and meaningful feedback to donor families. Some donor families receive correspondence from recipients themselves or recipient family members expressing their gratitude for the generous gift that has saved the life of their loved one.

Acknowledgement

Volume 23 Number 1 – March 2014

of correspondence gap. From this information, barriers to communication were identified and addressed.

In a survey of donor families, Batten and Prottas4 learned that, not only is it important for donor families to feel that they have contributed to the wellness of another person through the gift of donation, but feedback regarding the usefulness of that gift is also very important to them4. Receiving acknowledgement of the life-saving gift is the way that they confirm the usefulness of their decision to donate. 21

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As can be appreciated, there is a limited amount of literature on this topic. When statistic or quality information fails to yield the required material for this study, it is reasonable to turn to the technology and reliability of the social media network. Facebook, Twitter and YouTube are a phenomenal source of information regarding the thoughts and feelings of both donor families and recipients. It provided a wealth of data for this quality project. It was so wonderful to receive the cards and letters from the recipients — they arrived at a particularly difficult time for us. To hear how the recipients were so thankful for the donated organs and were seeing great changes in their lives was so encouraging to us at this time of sensing our loss more deeply. Donor family

donor family? If not, can we identify the correspondence gap and the possible barriers to communication? In Victoria/Tasmania (2010), there was a total of 108 donors that progressed to retrieval of organs for transplantation (seven of those donors were deemed medically unsuitable in theatre, thus a total of 101 donations occurred). Of the 108 donor families interviewed at the time of consent for donation, 94 stated that they wished to receive correspondence from the recipients and a total of 14 either did not want correspondence, were not asked the question or decided to have the correspondence kept for them (Figure 1).

All we really wanted was for the recipient or one of their family to say thank you ... we read about how grateful recipients are, but we really need to hear it. Donor family These comments reveal that not only is it important to the family to help others through donation, but the feedback regarding the progress and improvement (in quality of life) of the recipients and the acknowledgement of the precious gift is vital. This anecdotal information acknowledges how inspirational and powerful correspondence is to donor families. After receiving letters, donor families are very positive about the experience and share that with family and friends around them, thus perpetuating the positive outcome of organ donation. This positive response will be shared with others — the message of organ donation will be promoted.

Research analysis/correspondence gap In a retrospective, quality project (2012), donor histories from 2010 were reviewed regarding donor–recipient correspondence — did the families wish to receive correspondence? Did they receive a letter or letters from the recipients? If so, which organ group is identified as willing to correspond with the

Figure 1

Of the 101 multi-organ donors, a total of 59 donor families received a letter from a recipient. Of those 59 families, 22 received a single letter and 37 families actually received more than one letter — either from a different organ recipient or multiple letters from the same recipient. Eight donor families wrote back to the recipient. Unfortunately, a large proportion of donor families (42) did not receive a letter at all

Donation agencies and transplant groups hold a variety of thanksgiving and remembrance ceremonies, providing general support and acknowledgement of the gift.

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She refers to insufficiency as the lack of knowledge and understanding on the part of the recipient about the donation process and the meaning and importance for donor families to receive correspondence. Lack of process refers to the absence of a clear process or tool to facilitate the correspondence between recipients and donor families. Finally, legal concerns about privacy controls how personal health information is used, thus limits the access of this information for contact between the recipient and donor family5. So, we go back to the fact that thank you letters need to be voluntary. Hence it follows that donation agencies in Australia do provide abstract statements in their correspondence to Figure 2

donor families regarding the outcome of the donation and

Of the donors in 2010, the kidney recipients’ letters were more numerous. Is that because there are usually two donated kidneys per case, or is it because these recipients have suffered years of chronic illness and spent so much time imprisoned by their dialysis regimen?

basic information concerning the health and progression

The correspondence by kidney recipients is closely followed

In my experience, working with recipients, I have identified

of the recipient. More personal communication is not only desirable, but for some donor families, recipient letters may enhance the sense of comfort.

Of the donors in 2010 – the kidney recipient’s letters were more numerous. Is that because by liver recipients. is per because recipients there is usually 2 donatedThis kidneys case, orliver is it because theseusually recipients havethree suffered main years of chronic illness and so much time imprisoned by their dialysis regimen?

issues that prevent recipients writing to their do not wait years for a transplant, nor are they restricted donor families: The by kidneybut recipients closely followed by liver recipients by correspondence treatment regimen, they isdo suffer a multitude of – liver recipients usually do not wait years for a transplant, nor are they restricted by treatment debilitating symptoms and comorbidities — do they write Recipients may feel uncomfortable writing to their donor regimen, but they do suffer a multitude of debilitating symptoms and co morbidities1. – do they write thank youletters letters due of symptoms that they experience? the thank you dueto the to relief the relief of symptoms that they And, if that isfamily because they are not ‘worthy’ of the gift — they case, wouldn’t that be the same for heart and lung transplant recipients? (Figure 3). experience? If that is the case, wouldn’t that be the same for have not done something extraordinary to justify their heart and lung transplant recipients? (Figure 3). Figure 3. second chance of life.

Which of the organ recipients write?

to spell correctly or use the correct grammar. For some recipients, English is their second language and many harbour concerns about the correct use of the language,

12 Hearts 39

2. Some are not literate, or do not have the language skills

preventing them from writing to the donor family.

Lungs

3. Recipients have also expressed a concern that they feel Liver

Kidneys

they may add to the family’s grief by reminding them of their loss. From the literature1,2,4,5 and my experience with donor families, the donor families conceptualise the loss of their loved one as very separate from the process of organ

Figure and 3 limitations discussion Barriers

donation. Receiving a letter is an acknowledgement of the result of the donation process, not a reflection of the loss.

In her study, ‘Giving back to donor families: the Thank you letter package insert project’, Barriers and limitations discussion Colarusso (2006) describes three barriers or limitations to correspondence – insufficiency, institutional factors and legal concerns (2). Conclusion/recommendations

In her study, Giving back to donor families: the Thank

She refers to insufficiency as the lack of knowledge and understanding on the partDonation of the agencies should work closely with transplant units you letter package insert project, Colarusso describes three recipient about the donation process and the meaning and importance for donor families to receive correspondence. Lack of refers to the absence of a clear processto or create tool to awareness within the recipient of the value and barriers or limitations toprocess correspondence: insufficiency, facilitate the correspondence between recipients and donor families. Finally, legal concerns 5 about privacy controls how personal information is used, thus limits the access of this desire for voluntary communication with their donor family. . institutional factors and legal health concerns information for contact between the recipient and donor family (2). So, we go back to the fact that thank you letters need to be voluntary. Volume 23 Number 1 – March 2014 Hence it follows that donation agencies in Australia do provide abstract statements in their correspondence to donor families regarding the outcome of the donation and basic

TRANSPLANT JOURNAL OF AUSTRALASIA

The Australian Organ and Tissue Authority (AOTA) has

She identified that organ donation has more common

acknowledged the discrepancy between organ donations and

attributes to an act of charity, than it does to a gift1. Thus

recipient correspondence, and has worked with transplant

if organ donation was rebranded as an act of charity to the

units to produce branded brochures and guidelines to

society, the burden of donor–recipient acknowledgement

assist recipients to write thank you letters to donor families.

would be relieved.

Some transplant units provide workshops and/or individual assistance to recipients to write to their donor families.

References

In June 2011, DonateLife Victoria removed the question

1. Gerrand N. The notion of gift giving and organ donation. Bioethics 1994; 8(2).

“Would you like to receive correspondence from recipients of the donated organs?” from the Confidential Organ Donor referral Form. It was identified that this question potentially gave the donor family an expectation that they would receive correspondence. Alternatively, Gerrand suggested that organ donation should be redefined as an “act of charitable donation” — where a person donates his/her organs to be charitable to society1.

2. Vajentic A. Correspondence and personal contact between donor families and organ recipients: one OPO’s procedure and experience. Journal of Transplant Coordination 1997 Sep; 7(3):106–10. 3. Royal Melbourne Hospital/Red Cross Blood Service. Donation case files, 2010. 4. Batten HL & Prottas JM. Kind strangers: the families of organ donors. Health Affairs 1987; 6(2):35–47. 5.

Colarusso C. Giving back to donor families: the Thank you letter package insert project. Progress in Transplantation 2006 March; 16(1).

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12 13

Image 1 The Sirens mingle with DL staff during Chattering Tuesday in the Perth CBD. Image 2 Sydney@filmlifeproject filmmakers: FilmLife kicked off DonateLife Week 2014 with a forum and workshop for filmmakers to create short films about why it’s important to have the chat about organ and tissue donation. This project is supported through an Organ and Tissue Authority Community Awareness Grant. Image 3 A barista at The Queen Elizabeth Hospital’s Dine Inn in South Australia was urged to ‘have the chat’ over a cup of coffee. Image 4 George Street in Sydney’s CBD was looking vibrant with the magenta flags rippling in the sunlight all the way from Druit Street (Town Hall) to Bridge Street (almost Circular Quay) during DonateLife Week. Image 5 Bunnings stores across NSW helped to spread the DonateLife message during DonateLife Week. DonateLife NSW staff from the Tamworth Base Hospital were interviewed by NBN at the Tamworth Bunnings store to encourage people to have the chat that saves lives. Image 6 Mr James Goodwin, AAA; Ms Sue Dillon, ANZ; Dr Paul Bates, BUPA; Amanda Hill, heart transplant recipient; Senator Fiona Nash, Assistant Minister for Health; Mr Rory Thomas, donor family member; Mr David Koch, Chair of the OTA Advisory Council; Ms Yael Cass, CEO OTA; Mr Greg Thomas, Linfox and Mr Philip Prior, Australia Post at the national launch of DonateLife Week 2014. Image 7 DonateLife NT celebrated their launch for DonateLife Week 2014 at the waterfront precinct wave pool. Pink pool noodles and pink slushies were handed out to the public to help raise awareness of organ and tissue donation in the NT. Image 8 Rockhampton Hospital ICU staff and their families showed their support for DonateLife Week by participating in a 10 kilometre hike up (mostly straight up) Mount Archer, followed by a barbecue breakfast. Image 9 Thousands of Canberrans joined in the annual DonateLife Walk, which took place around Lake Burley Griffin on Wednesday 26 February 2014. Image 10 Carlton team members David Ellard, Chris Yarra, Dylan Buckley, Matthew Kreuzer, Anthony Carrazzo and Cameron Giles encouraged everyone to ‘have the chat that saves lives’, during a visit to Central Gippsland Health Care in Sale — come on AFL clubs! Image 11 Kathe Phillips trophy cycle of giving - Kate Phillips had her transplant surgery last year. She joined some 600 cyclists to launch DonateLife Week in Queensland. Image 12 A field of DonateLife hearts at the Parliament House Gardens in Hobart represented the organ donors and transplant recipients in Tasmania over the past 25 years. Image 13 DonateLife QLD’s Kate Stodart and The Prince Charles Hospital (TPCH) Foundation CEO Michael Crosby present heart-lung recipient Kate Phillips with the Mal Long Memorial Trophy for her inspiring 65 kilometre ride today in the Cycle of Giving. Kate was born with congenital heart disease and had her transplant surgery just last year. She joined some 600 cyclists who braved the head winds to cycle from Lansborough to Chermside to celebrate organ and tissue donation and launch DonateLife Week in Queensland.

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DIARY DATES 2014 For more information, check out the links on the TNA website http://www.tna.asn.au 11–13 June 2014

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17-18th October 2014

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23rd National Conference

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