The programme for government aspires to the introduction of a “soft opt out” process for organ donation as part of the Human Tissue Bill and this is being evaluated by the Oireachteas health committee this week.
Recently, during organ-donor awareness week, we witnessed at first hand the enormous courage and generosity of Irish familes who chose to donate organs in the most difficult of circumstances.
Ireland historically has performed proficiently in regard to organ donation and transplantation. However, the unmet need of patients requiring organ transplantation continues to grow and a fall in the organ donation rate as witnessed in 2010 would have a negative impact on the lives of many Irish families.
Recognising the substantial healthcare and econonmic benefits of organ transplantation, the EU Commission Action Plan on Organ Donation and Transplantation (2009-2015) emphasises a requirement on all states to support and enhance organ donation.
Furthermore, a recently enacted EU directive on the issue requires a strong transplantation system with clear standards of governance and accountability. So there are compelling reasons to address the legislative and organisational structures in relation to organ donation and transplantation.
There are three distinct transplant programmes in the Republic. Although located in three university teaching hospitals in Dublin, these clinical units deliver services to the entire nation. They are located and compete for resources in acute hospitals, which also deliver regional and acute local services.
The national renal and pancreas transplant programme is based at Beaumont Hospital. The national liver transplant programme is located in St Vincent's Hospital. Both the heart transplant programme and the lung transplant programme are based in the Mater. At present 685 people await transplants.
'Opt in' donation system
Organ donation in Ireland is based on an "opt in" donation system. On average there are 80 donations a year. However, in 2010 there were just 58 donations. Co-ordination of organ donation is provided by the renal transplant service at Beaumont Hospital. This is unusual in an international context and has arisen based on historical needs, to compensate for the absence of formal structures.
Many countries have successfully developed a structured approach to organ donation and transplantation. In Croatia, which has a gross domestic product of €65 billion – compared with a GDP of €212 billion in Ireland – organ donation structures have resulted in increased donation rates to 30 per million of the population, compared with 18 per million in the Republic.
The backbone of the Croatian model is a network of hospital physicians responsible for organ donation within intensive care units. The legislation in Croatia was also adjusted to include opt out, in keeping with Spain, Belgium, Austria and Portugal. Countries that have focused efforts in relation to organ transplantation have seen substantial medical and financial benefits. Currently, however, there is no legislation relating to organ donation in the Republic.
To rectify this deficiency, the programme for government provides for presumed consent (opt out) for organ donation as part of the Human Tissue Bill. Two forms of presumed consent exist: “hard” and “soft”. “Hard” presumed consent is where citizens must actively document their wish not to participate in organ donation.
“Soft opt out” assumes that citizens participate in organ donation but that the medical staff must seek permission from the family. Recently both Northern Ireland and Wales have indicated their intention to deploy this system. The Government here proposes a “soft opt out” with the participation of the family seen as being central to the process.
The soft approach protects the autonomy and dignity of the deceased by placing the stewardship of the decision with the family. Therefore the goal of “soft opt out” is to encourage organ donation to be the society norm. It does not devalue organ donation as an extraordinary gift of one family to another
Donation infrastructure
However, legislation in isolation does not enhance organ donation
. R
ather, it
needs to be part of a package
that includes donation infrastructure. European league tables of organ donation rates are consistently dominated by those countries
that have both presumed consent and formal organ donation infrastructures. Donation infrastructure protects the interests of the donor, ensuring
families are
central to the process.
Therefore two steps would be required. Intensive care “key donation personnel ” would be assigned across the emerging health service networks. These medical and nursing personnel with a focus on organ donation would protect the interests and welfare of the donor whose families chose to donate organs. Secondly, an independent national organ procurement office would be established .
The deployment of these structures would bring Ireland in line with international practice. It would reasonably allow enhanced donation rates of 24 per million of population, which would save up to 750 lives and remove 520 additional patients from dialysis over the next 10 years. Most importantly it would protect against the risk of a fall in organ donation rates similar to that witnessed in 2010.
Organ donation and transplantation in Ireland is at a crossroads. With both the proposed “soft opt out” legislation and infrastructure support there is an opportunity to provide enormous benefits for generations to come.
Prof
Jim Egan is consultant respiratory physician at the Mater h
ospital in Dublin