Irish Independent Op-Ed: Prof John Crown “Seanad recall – organ donation finally gets attention it deserves”

Far from being a publicity stunt, the debate was a great help to organ donation

A GOOD DAY'S WORK: Senator Mark Daly, centre, with Mark Murphy, chief executive of the Irish Kidney Association, and Regina Hennelly, who received a kidney transplant, outside Leinster House

A GOOD DAY’S WORK: Senator Mark Daly, centre, with Mark Murphy, chief executive of the Irish Kidney Association, and Regina Hennelly, who received a kidney transplant, outside Leinster House

JOHN CROWN – Sunday 25 AUGUST 2013

When a person has irreversible, end-stage failure of the heart, lungs or liver, death is sadly inevitable. It can be a lingering death, which although delayed and palliated by medication, inflicts upon its victims a dreadful helplessness while they bear witness to their own decline. For patients with end-stage kidney failure the timelines are longer, life can go on for some years, but it is a life that is hemmed in, handicapped and restricted by drugs and by dialysis, usually involving a kidney machine.

But, sometimes, a knight in shining armour rides to the rescue, and these people are plucked from the jaws of death. They are saved by the bravery of extraordinary heroes, heroes who make the decision to donate their own organs, or those of their recently deceased, close loved ones, to restore life to an otherwise doomed fellow human, one who is usually a total stranger.

In most cases, the heart, lungs, liver, pancreas or kidney that are transplanted will be “cadaveric”, ie removed from the body of a newly dead person. The donors, disproportionately younger people, have suffered “brain death” typically as a result of an accident, brain haemorrhage or other sudden catastrophic illness. The potential donor may have made their own wishes known, eg by carrying a donor card. Perhaps they had made a legal “advanced directive”. In other cases, where the deceased person’s wishes had not been documented, their relatives will be approached to ask if they might consider allowing the organs of the deceased to be transplanted.

It is difficult to imagine the state of mind of parents, spouses or siblings, who after hearing the worst news of their lives from a garda, or a clergyperson or a doctor, now find themselves at the bedside of a cherished loved one whom they have been told is already dead, but whose heartbeat and breathing are being artificially sustained by medical technology.

Potential donors and, crucially, their families, need to understand that organs will never be removed from their loved ones if they are alive. The person must be legally dead before their organs can be removed.

A person who has been deemed to be brain dead is already deceased, even though their heart is still beating and oxygen is being fed to their lungs via a life-supporting breathing machine, or ventilator. They have living tissue, but the “person” is passed away. The machines that keep brain-dead bodies functioning will never be turned off if there is any chance of recovery.

In other cases, transplanted organs are gifted by healthy volunteers. These are usually kidneys (most of us have two, and we can generally survive on one). In rare cases a portion of lung or liver can be donated by these amazing people. What heroes they are! Brave Joe Brolly!

The gift that donors and their families make is illustrated by the survival of the recipients. In the case of heart transplants, where patients on waiting lists for transplant typically have life expectancies measured in months, the average survival post-transplant in leading centres is now 15 years. For liver recipients, which are carried out on patients with liver failure or primary liver cancer whose life expectancy is less than a year, more than 75 per cent survive five years after transplant. Kidneys can be spectacularly successful, with the lead patients now surviving more than 30 years.

Ireland does relatively well in general, with above average transplant rates among European countries, but we lag far behind the very best in Europe (Spain with nearly twice our rate). As a result, tragically, about one person per week in Ireland dies while waiting for a transplant. We do very poorly in some areas. We rank 24th out of 28 countries for heart transplant with a frequency about 15 per cent of that of Croatia (despite our having one of the greatest burdens of heart disease in the world), and 15th for lung (about 12 per cent as many as Austria). Our pancreas transplant rate is less than one half that of Norway.

It will be apparent that in addition to the normal constraints imposed by an overstretched health service, there is an additional critical choke point for transplant – the availability of donors. One solution is “presumed consent” in which it is assumed that the

brain-dead deceased person would have agreed to their organs being used unless they specified otherwise during life. In “soft-opt out” this presumption of consent can be withdrawn by the family. Whether presumed consent will actually increase transplant rates is the subject of discussion and some controversy.

What is not controversial is that the Irish transplant programmes need urgent development. In Ireland, a tiny cadre of transplant surgeons spread over three hospitals (Beaumont for kidneys and pancreas, Mater for heart and lung, St Vincent’s for liver) do truly heroic work. However, as has been pointed out by Mr David Hickey, among others, the system is under-resourced. For instance, the Republic of Ireland has no (zero) hospital based transplant co-ordinators, the persons who assess the suitability of donors and who counsel their families through the process. Northern Ireland has 24. Shortages of operating theatres and intensive care beds are critical determinants of our waiting list.

Senator Mark Daly was nominated to run for Seanad Eireann by the Irish Kidney Association, and takes his mandate seriously. When a European directive on transplant (itself innocuous but one which would address none of the Irish deficiencies) was signed into law by ministerial instrument in 2012, he asked the Government for a debate and was denied. He sought to recall the Seanad in the summer of 2012, collected the necessary 20 signatures, but was nonetheless denied the legally mandated recall. He tried again this summer, and the Government belatedly assented to the recall.

The debate which took place last week was thus the first parliamentary scrutiny of this new “Irish” legislation which was crafted outside our Republic.

While some judged Daly’s action to be a publicity stunt, it has to be admitted that the Government, in response to his motion and to the debate it necessitated, finally gave a timeline for the Human Tissue Bill which may deal with some of the real deficiencies, and which has been creaking through the bureaucracy since 2009. It also announced increased resourcing for the transplant office of the HSE where Dr Jim Egan has been toiling dutifully and thanklessly on behalf of those who need a transplant.

I suspect the debate inspired a few more people to carry donor cards. If it was only one, it was worth recalling the Seanad for.

A good day’s work Senator Daly. A good day’s work.

Senator John Crown is a consultant oncologist

Leading Oncologist, Professor and Senator John Crown (@ProfJohnCrown) signing the letter to recall the Seanad this August.

Leading Oncologist, Professor and Senator John Crown (@ProfJohnCrown) signing the letter to recall the Seanad this August.

To read this article on the Sunday Independent Website, click here.

Twitter-64Be part of the Conversation! Tweet @SenatorMarkDaly #seanad to stay up to date on Mark’s work for Organ Donation and Transplantation in Ireland here. To follow Professor John Crown on twitter, click here, or his blog here.

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