Respiratory nurse and Nursing Times blogger Janelle Yorke on donor transplantation.
Having been a nurse consultant for heart and lung transplantation I follow the UK’s organ donation and transplant agenda with great interest. Lung transplantation in particular has come through a testing beginning and now offers a viable option for people with lung disease. The major obstacle is the lack of donor organs. Transplant teams have responded to this challenge and increased the donor pool by accepting ‘marginal’ donors (i.e. older donors and people with a history of smoking). To some this may seem ironic; transplanting the lungs of a smoker into someone who may have a smoking related disease. But COPD is only one of many reasons why someone may require new lungs.
International statistics put double lung transplant survival rates at 53% at 5 years and 33% at 10 years. The centre at Newcastle has a 10 year survival of nearly 50%. Some may question whether or not this should be deemed a great success or even value for money. Transplant techniques and post transplant care is continuing to evolve and improve. No doubt survival rates will continue to improve as time passes. But let’s not forget that there are individuals, real people with hope behind these statistics. A 50% chance of living for another 10 years if you are in your 20’s, or even 60’s is probably a gable most of us would opt for. The other option is certain death.
What many people don’t realise is that you, or someone you know, are more likely to need an organ transplant than become an organ donor themselves. This raises the question as to why more people do not join the organ donor registry. Perhaps a lack of knowledge and understanding plays a major role. There is also the myth that if you sign-up to be an organ donor perhaps not everything will be done to save your life. This is simply not true.
The government’s Organ Donation Taskforce has recently introduced a number of measures to try to increase the number of people signed-up on the donor registry. Many members of parliament and donor and transplant agencies would like to introduce an opt-out scheme, similar to that in Spain. Under this type of scheme, people would have to object specifically if they did not want their organs to be available for transplant after they died. The RCN has recently opted to not support an ‘opt-out’ policy on organ donation. A recent article in the Nursing Times states that this decision was made following consultation with its members. Unfortunately, the number of nurses who responded was very low and hardly representative – about 150 nurses either individually or through joint responses. Of these, 43% were in favour of ‘presumed consent’ (i.e. opt-out scheme) and 57% wanted the RCN to support the current opt-in policy.
A fair comment was made by Maura Buchanan (RCN president) that evidence from Spain showed that the role played by transplant coordinators was the key factor to improving the number of donors. However, donor coordinators need to be given the opportunity to approach families in the first place and to seek consent. This does not always happen.
I am not suggesting that the UK should definitely move to an opt-out scheme. What I am suggesting is that the RCN have been too hasty in changing from ‘no official position’ to an official stance of not supporting an opt-out scheme.
Perhaps a position of neutrality, as recently placed on the issue of assisted suicide, would have been a more appropriate option at this stage. At least ‘neutrality’ would be more amenable to open debate and afford the position that more research and information is needed before an official position can be made. What needs to be added to the debate is the importance of individuals talking to their family about what they would want in the event that they should be in the position to be an organ donor.
The positive step in all of this is making the personal decision about whether or not you would like to be a donor and letting people know, including registering that decision with whatever scheme is in place. This alleviates the burden from loved ones from having to make such a decision at an extremely stressful time.
As a society we are generally not willing to talk about death, especially our own. The recent media and public interest in the assisted suicide debate seems to be changing this. People are starting to talk about death; it is after all the final result for us all. How we weigh up the needs and hopes of thousands of patients waiting for an organ transplant against the pros and cons of an opt-in or opt-out scheme is still a very debatable subject.