Awarness, not presumed consent, is the key to boosting organ donation
As consultants in the only medical specialty looking after the patients who become organ donors after death, we welcome the decision by the Stormont health committee to reject presumed consent ("opt-out") legislation at this time. We are pleased that members of the committee took note of our concerns, which were presented in written and oral evidence, in reaching their decision.
We welcome all measures that will positively influence our work to increase the number of people who donate their organs after their death. However, the proposed Bill was unhelpful and potentially damaging.
At present, Northern Ireland has the highest rate of organ donation in the United Kingdom and one of the highest internationally. Nevertheless, demand for organs for transplantation continues to outstrip supply and, if more people made their wish to donate known in advance of developing critical illness, the donation rate would be higher still.
The current available international evidence does not demonstrate that presumed consent legislation would improve the donation rate. Indeed, presumed consent legislation could heighten any perceived conflict of interest between continuing life support and ceasing it in order to retrieve organs. There was a lack of clarity in the Bill regarding how the situation would be handled if family members objected to the presumption of consent.
Furthermore, presumed consent introduces the possibility that patients' organs might be taken against their wishes (if they have not made their wishes known in advance, as is often the case). If this were to occur, and receive media attention, it would have an adverse effect on organ donation.
Availability of a means to register objection to donation, ahead of unforeseen critical illness, is an insufficient safeguard against such a scenario. This is because many postpone reaching and/or expressing their view until it is too late.
With regard to any future amendments to the Bill which MLAs may propose, it is most important that the key ethical principle in medical practice of honouring patients' likely wishes is not undermined. Any initiative to improve donation rates should not sacrifice this key principle.
Consistent with existing legislation, family members have an important role in assisting medical and specialist nursing staff in determining the wishes of patients who are unconscious and dying.
When a patient's wishes on organ donation are not known, family already can consent to donation under current legislation. We would oppose introduction of legislation which would increase the capacity of family members to override a patient's expressed wishes.
Such legislation would not only encourage undermining of that key principle of medical practice, but it could undermine the effectiveness of the Organ Donor Register and reduce donation rates.
A family which knows that their relative wished to become an organ donor (either because he/she is on the Organ Donor Register or because he/she had a discussion about their wishes) is much more likely to give consent to organ donation than a family of someone who is not on the register, or who has not openly discussed his/her wishes.
As Wales has only just embarked on presumed consent for deceased organ donation, there is an opportunity to observe the impact that the Welsh legislation will have, judge their experience, and then consider its likely impact if it were to be introduced in Northern Ireland.
Irrespective of the form of donation legislation, we must all work to influence societal attitudes to organ donation, which is the key to increasing consent rates and the number of life-saving organ transplants. Many see the "family discussion" as the fundamental process which will increase organ donation further in Northern Ireland. We all need to discuss our wishes with our families, so they know what decision to make in the event of our deaths.
There remains an opportunity to pass an Organ Donation Bill for Northern Ireland by amending this Bill, having removed the presumed consent elements and retaining the elements which place enhanced responsibility on the DHSSPSNI for education (eg, in schools, in partnership with the Department of Education) and in raising societal awareness of the issues and the need to make our wishes known to family members.
If we are to see further increases in donation, it is in society at large that change needs to come, as this is ultimately what affects the decisions taken inside intensive care units.
Dr John Trinder is a consultant in intensive care medicine. He writes here on behalf of his colleagues, Doctors Paul Glover, John R Darling and George Gardiner