Ronan O’ Sullivan and Maurice Murphy. Cork Institute of Technology, Ireland.

1. Increasing Organ Donation in Ireland: The Role of Infrastructural Improvements and Social Marketing. Ronan O’ Sullivan and Maurice Murphy. Cork Institute of Technology, Ireland.

2. Transplantation of Human Organs • The transplantation of human organs and tissue is currently regarded as one of the great achievements of 20th century medicine . • Until about 1980 however, successful organ transplants were rare. Although reliable surgical techniques to transplant most major organs were available by the 1970s, preventing patients’ immune systems from rejecting the new organs proved difficult.

3. Transplantation of Human Organs • Most patients died of complications arising from rejection of the organ. • In the early 1980s, a new generation of immunosuppressive therapies were introduced. These therapies reduced the chances that a recipient’s immune system would reject the transplanted organ.

4. Organ Donation in Ireland • 2011 – 650 patients on the donor waiting list. • Deceased organ donors vary from 90 (2009) to 58 (2010) to 93 (2011). • 248 organ transplants from the 93 deceased donors, which along with an additional 27 living donor kidney transplants meant a total of 275 total organ transplants in Ireland in 2011.

9. 3 Sources of Donated Organs 1. Brain Dead Cadaveric (Deceased) Organ Donation. 2. Non-Heart-Beating Cadaveric (Deceased) Organ Donation. 3. Living Organ Donation.

10. Research Objectives • What infrastructural alterations are needed to the health system to increase organ donation in Ireland? • Is an “opt-out” system for organ donation a solution to the lack of donors in Ireland, where everyone is presumed a donor unless they opt out? • How can social marketing be used to increase organ donation in Ireland?

11. Primary Research • Eleven interviews were conducted for the purposes of this research between January and July 2011 with leading personnel from the fields of organ donation. • Included transplant surgeons, medical directors of hospitals, organ donation coordinators, leaders in patient advocacy, former transplant recipients as well as social marketers both in Ireland and abroad.

12. Finding Number 1 • Need for a Legislative Framework for Organ Donation • Ireland currently does not have a legislative framework on transplantation. • The Government needs to draw up transparent legislation governing organ donation and transplantation and give the new National Organ Donation and Transplantation Office, the legal and moral authority to pursue the organ donation agenda.

13. The recent setting up of the National Organ Donation and Transplantation Office in Ireland, therefore, under the stewardship of an eminent consultant respiratory and transplant physician, is to be welcomed. • This new office should act as a Transplant Authority and should be given a clear legislative mandate, to implement key policy initiatives to increase donation.

14. “Opt-out” legislation (where those who did not expressly opt-out of being a donor, would be considered donors) is not a solution. • “Opt-out” legislation is impractical and unnecessary if the proper support and backing is provided to the organ donation issue by Government. • The policy should be one of “informed consent” rather than “presumed consent”.

15. Finding Number 2 • Need for the new National Organ Donation and Transplantation Office to Develop an Organ Donation Agenda • Need to increase organ donor awareness within the Health Service Executive (HSE) itself. (The HSE runs the national health services in Ireland). • The HSE is not communicating properly, the importance of organ donation to hospitals and staff within hospitals.

16. The majority of Ireland’s hospitals are failing in their moral obligation to consistently source organ donors for referral to transplant units, and as a result in 2010, transplant activity dropped back to 1989 levels. • This lack of a holistic approach means that while Beaumont Hospital, Dublin sourced 14 donors in 2010, Cork University Hospital, Cork only sourced one donor.

17. This new National Organ Donation and Transplantation Office should have the power to liaise with the HSE and Ireland’s 12 main hospitals to record organ donor activity in each hospital, as well as communicate the importance of organ donation to the hospital directors, managers and all other hospital staff.

18. The new National Organ Donation and Transplantation Office should have the power to audit all intensive care units in hospitals throughout Ireland, to ascertain how many deaths were acted upon for donation. It should also have the power to hold hospitals to account for low donor referral rates.

19. Finding Number 3 • Need for Social Marketing to Target Key Influencers • The education, encouragement and engagement of medical personnel are the key to this behaviour change strategy. • The lack of a coordinated donor awareness programme has led to a lack of awareness and education about organ donation among medical personnel.

20. Government and the HSE have to be convinced that transplantation is one of the key options in medicine, where the gold standard premium treatment (transplantation) is cheaper than managing the disease. • Government need to be made aware of the large cost savings associated with transplantation over dialysis, in the case of kidneys.

21. Cost Savings of Transplantation • A transplant costs about €50,ooo in Year 1 and then €7,000 - €8,000 for every year after that. • One kidney alone could save €638,000 in dialysis over a 15 year period. • A year on dialysis costs €60,000. • 1,750 patients on dialysis now in Ireland but that will be over 3,000 in ten years time.

22. Everyone from hospital managers/directors to front line clinicians, nurses and intensive care doctors should be targeted with an organ donor awareness and education campaign to promote organ donation as a natural part of end of life care. This requires a whole-of-hospital approach and a behaviour change strategy that only the new National Organ Donation and Transplantation Office can effectively deliver.

23. Organ donation and transplantation has to be promoted as a viable and cost-efficient solution. • A behaviour change programme should then be rolled out to the front line staff and intensive care doctors and nurses, as these have the greatest impact on potential donors and their families. • Training would allow medical personnel to decouple the death from the request to donate,

24. Training is urgently required, and this was illustrated in the findings, where through a lack of guidance, education, regulation and training, it is estimated that 20 per cent of donations in Ireland come from relatives approaching intensive care doctors.

25. Finding Number 4 • Need to create Organ Donor Coordinators in each hospital • Central to Ireland’s organ donation infrastructure is the creation of a specific organ donor coordinator role within Ireland’s 12 major hospitals. There is presently no such role in the health care system in Ireland. • Spain and Croatia have such coordinators in their hospitals.

26. The organ donor coordinator role would involve sourcing potential donors, requesting brain stem death tests, communicating with the family of the deceased, making the organ donor request to the family, organising the logistics of the transplantation of the organ, as well as the promotion of organ donation throughout the hospital to hospital staff and throughout the local area to the general public.

27. This legislative support and regular training as well as regular communication with the new National Organ Donation and Transplantation Office is fundamental to the success of the organ donor coordinator in the health system, as they then educate other medical personnel about the importance of donation and transplantation. • The present system in Ireland fails to take account of all the opportunities for organ donation. The organ donor coordinator could focus for instance on living donation for kidneys and liver.

28. Finding Number 5 • Need for Social Marketing to create a Moral Duty to Donate • Need to create an on-line organ donor registry to record thevoluntary intentions of the general public to donate, the intentions of those who do not wish to donate and if possible to record the agreement of the next of kin.

29. Combined with the creation and training of organ donor coordinators, the creation and running of such a registry should be handled by the new National Organ Donation and Transplantation Office. • The registry would also have the effect of creating a norm of organ donation by getting people to “opt-in” to the organ donation process.

30. Social marketing should create a moral obligation to become an organ donor. • Former recipients of organs should be encouraged to lobby as well as promote increased donor awareness. • More promotion for instance, of the World Transplant Games needs to take place in Ireland to highlight the huge success of transplantation.

31. Croatia versus Ireland • Similar population – 4.4 million people. • 2010 – Croatia had a per million population donor rate of 30 (Ireland was 12.6). • Croatia is now in third position in Europe for heart transplants, with 36 heart transplants in 2010 (Ireland = 3). • Croatia has second highest rate in Europe for deceased organ donations in 2010, up from 14th in 2009. • Croatia tops the European kidney and liver transplant league in 2010.