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Sir, It is now 25 years since I received my second kidney transplant and I am extemely grateful to the person who took the trouble to register the intention to be a donor. I was very lucky. However, 1,000 people are not and are still dying unnecessarily every year owing in part to the paucity of available organs for donation.
I have just read the report from the UK Organ Donor Task Force and I am disappointed by their conclusion not to recommend the introduction of presumed consent or “opt-out”. I am also surprised that transplant recipients were only represented on one of the six task groups and numbered only two out of a total of 70 task group members.
The conclusion of the task force could be summarised as that it recognises that 73 per cent of people consulted feel that an opt-out system would be desirable — but it all seems a bit difficult to implement and it might upset some families and faith groups. It highlights that Spain has the best record in the world for availability of organs but suggests that this was as a result of Spain improving its systems rather than the introduction of opt-out. In practice, its success is due to both. The task force also conveniently ignores that Austria, which operates a “hard opt-out” system where relatives are not consulted, has the second-best record in the world.
This also highlights one of the other problems inherent in the present system of opt-in. This relates to the custom of doctors routinely asking close relatives their views on whether organs should be used to save a life — even if their loved one has explicitly made their wish to be a donor very clear before their death. A clearly documented adult decision to become a donor should not ever be countermanded by anyone — even a close relative. A change to this practice alone would significantly increase the number of succesful transplants.
This is really too important to be tagged as “too difficult — defer for future consideration”. The five-year delay before reconsideration suggested by the task force would result in the unnecessary loss of a further 5,000 lives.
Phil Willan
Blackburn, Lancs
Sir, As a 20-year heart recipient who began her post-transplant journey at 25, I approach the issues raised in Carol Midgley’s article (“Hannah Jones case may blight heart swaps”, Nov 15) experientially rather than theoretically. In my view, there is no blight brought to bear on the public image of heart transplantation by Hannah’s story; instead, there is an infusion of much needed reality. Only good can come from seeing the deep complexities of the heart transplant choice as pointed up and put under an unprecedented bright light by Hannah’s particular circumstances.
Heart transplant is not a simple miracle. It is a mixed bag; a joyous, terrible, amazing, awful existence. It takes work to survive it, a sometimes Herculean effort to sustain the wonderful donor organ over time. Hannah and her family understood this, and in the context of Hannah’s years of suffering, made a decision not to take on the medical challenges and traumas that would accompany the miracle of extended life.
Once the public understands that post-heart transplant existence is hardly easy “normal”, transplantation as a whole stands to benefit. Heart waiting list candidates will be more informed decision makers, and potential donors can rest assured that donor hearts will find continued life in recipients who embrace the extraordinary blessing along with the extraordinary hardship of living with a transplant.
Amy Silverstein
Chappaqua, New York
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