What if everyday was a race against time? Every breath measured, appreciated and potentially the last. For people awaiting an organ transplant this situation is a daily reality. The National Organ Procurement Service estimates there are currently 600 people on the waiting list for organ transplants in Ireland. Of these, 534 people alone are awaiting kidney transplants.
Seventy year old Dubliner Terry Mangan knows all too well the gift of an organ transplant. At the age of 58 he contracted a form of cardiomyopathy, a disease in which the heart muscle becomes inflamed and doesn't work as well as it should. Realising his heart function was deteriorating rapidly he had no hesitation in joining the waiting list for a new heart. Eight months later he was given a new heart at the Mater hospital in Dublin.
Thirteen years on and Mangan is chairman of the European Heart and Lung Transplant Federation, an avid golf player, intrepid traveller and ‘fit as a flea’. He admits that rejection of the organs could still occur, and this is a small but consistent worry. Mangan will take anti-rejection drugs for the rest of his life but says this is a ‘small price to pay for a second bite of the cherry’.
Many people are nervous about the prospect of becoming an organ donor, or being asked to donate a family member’s organs. But when you listen to the story of someone like Mangan it’s hard to see how organ donation can be viewed as anything but positive. Donors may also help multiple people by organs being given to more than one person. All organ donors in Ireland are people who have died in hospital whilst on a ventilator. Death under these circumstances is determined by the absence of brain function. Brain stem tests are carried out by two senior doctors to determine if any activity remains.
The medical staff performing the tests must be independent of transplantation. An organ is never removed for transplantation unless a recipient has been identified and next-of-kin have consented.
The issue of organ donation remains topical but controversial. On January 9th, Minister for Health Mary Harney launched a public consultation on systems of consent for the donation of organs for transplantation. The consultation period was due to end on February 27 however ‘following a high level of interest’ in the form of over 550 submissions the DoH has extended the submission deadline to March 14.
The current rate of organ donation in Ireland is higher than the European average at 21 per million population, compared to a figure of 13.2 million in the UK. However, Spain leads the field with 34 donations per million population; the reasons for which will be explored later.
Three possible options have been put forward; informed consent (opt-in), presumed consent (opt-out) and required request. Informed consent is the system currently in use in Ireland. This system relies on consent for organ donation to have been given by the deceased before death, or by a relative after death. This method gives next-of-kin control over whether they want to donate, but some say this limits the amount of organs that are donated.
The presumed consent system is certainly more controversial and assumes that the deceased has consented to organ donation after death unless he or she has specified otherwise. Spain changed from an informed consent to presumed consent system in 1990 and has seen donation rates double since then. However, other countries such as Sweden who also use this system have not seen such positive results. This has led some to believe that the better training of specialist transplant co-ordinators, rather than legislation led to the increase in donation rates in Spain.
The first lung transplant in Ireland took place less than four years ago on May 13th 2005 at the Mater Hospital in Dublin. The majority of lung transplants are received by cystic fibrosis sufferers; approximately 30 CF suffers awaiting lung transplants in Ireland today. Most of these are young CF suffers who require a lung transplant as a matter of life and death. Unlike kidney disease which may be treated through dialysis, CF suffers often need one or both lungs replaced to regain some sense of normal health. But concerns such as whether they will get a transplant or be well enough to receive a transplant are continual worries.
Godfrey Fletcher, CEO of Cystic Fibrosis Association of Ireland believes informed consent is the best way forward. However, he believes it is crucial that mandated request is part of the system meaning it would be the obligation of the medical team in the Intensive Care Unit (ICU) to speak to the family and request consent for organ donation.
The CFAI would like to see the Government draft legislation to create a centralised independent transplant authority, as is the case in most other European countries. Currently the National Organ Procurement Service, based at Beaumont Hospital, manages the procurement of organs for all Irish hospitals. But Fletcher believes this function should not be based at any one hospital and a centralised body for hospitals and transplant co-ordinators to report to would be more effective.
Spain is often citied as an example of a country where presumed consent works well. Fletcher believes the marked increase in organ donation in Spain is down to the success of the transplant co-ordinators who are highly effective in gaining consent for donation:
‘Changing the legislation won’t increase the number of organ donors but specially trained organ donation co-ordinators do,’ he commented.
The third option of required request attempts to balance the informed consent and presumed consent approaches. This system would allow people to register as potential organ donors when utilising government services such as social welfare or applying for a driver’s license.
After each potential organ donor is identified, the potential donor’s family must be approached by a qualified donor co-ordinator who will request consent for organ donation.
As a heart recipient, Terry Mangan believes the required request with mandatory reporting is the best way forward for Ireland. The mandatory reporting elements would require ICU units and donor co-ordinators to record requests for consent and the outcomes of such requests.
He feels presumed consent is a policy which cannot work, simply because doctors would not go against the express wishes of next of kin to remove organs for donation.
On the basis of the evidence presented above it would appear that presumed consent (opt-out) is not the clear cut option it might have appeared to be. The experience of Spain illustrates that training specialised transplant co-coordinators may be a far better way to exploit organ donation rates than the presumed consent option. Whatever system Ireland chooses, it's imperative that we continue to procure as many organs as possible so that people like Terry Mangan can get a second chance at life.
You can give your opinion on which of the three options Ireland should adopt until this Friday, March 14th. The Department urges anyone with an interest in this subject to submit their view via e-mail to: tissue_legislation@health.gov.ie or via post to: Tissue Legislation Consultation, Department of Health & Children, R. 324, Hawkins House, Hawkins Street, Dublin 2.
Donor cards are available at your local pharmacy or from the Irish Kidney Association at www.ika.ie or by texting DONOR to 50050.
(art from 247donation.com)
