Organ donors need to know what they agree to

By SUSAN WATSON*

The Government is investigating setting up a computer register of people willing to donate organs when they die.

A Herald report said the National Transplant Donor Co-ordination Office considered the present system was working quite well. Yet the rate of organ donation in New Zealand remains one of the world's lowest.

It may be that there is a deep-seated reluctance to act as donors. Certainly, many view the notion of organ harvesting with an almost visceral distaste. But there seems no reason the percentage of people who are willing to be donors should be any lower in this country than others.

It may be that there are more potential donors, but problems in the running of the organ donation system act as a deterrent. Certainly, there are major flaws with the database, which has not been set up and run in accordance with its enabling legislation.

Organ donation is governed by the Human Tissue Act, which was amended in 1989 to allow the establishment of a central computer for organ donors to be run either fully or partly under the control of the Director-General of Health.

Unfortunately, it is not clear what a request made on a driver's licence application form exactly permits, and in what circumstances it can be relied upon.

Under the act, the people lawfully in possession of the body (which, when questions of organ donation arise, will usually be either the hospital or the coroner) can rely on a record held on a health computer system and remove a part for use in accordance with that request.

This is unless there is reason to believe the request was subsequently withdrawn. There is no requirement in the legislation that inquiries be made to determine whether the request has been withdrawn. Organs can be removed and used for therapeutic purposes. This would include transplantation.

But if the request is worded broadly enough, the section also authorises the removal of body parts for the purposes of medical education or research. The issue, therefore, becomes: what exactly are people who agree to become donors on their driver's licence application forms agreeing to?

The application for a driver's licence form is produced by the Land Transport Safety Authority. Among the questions is: "Would you be willing to donate organs in the event of your death?"

Next to that question is the following explanation: "If you answer yes, in the event of your death your next-of-kin will still be asked for their agreement to donate organs. Please let them know of your wishes."

The wording raises legal and practical issues. The legal aspects relate to whether the question complies with or is even related to the provisions of the Human Tissue Act. The practical questions include interpreting what removals exactly a positive response to the question authorises in the event of death (if any), and if this is the best way to collect and store data on organ donation.

It is not clear whether the data held by the authority is on a health computer either directly or partly under the control of the Director-General of Health as required by the legislation.

If it is, organs can legally be removed unless the request was subsequently withdrawn. Although the act allows requests to be made for specified parts, the question in the driver's licence permits only an affirmative or negative response.

The act also permits individuals to specify the purposes for which the body parts may be used. The three alternatives mentioned are therapeutic purposes, medical education and research.

Read literally, it is possible to argue that a request to be an organ donor in a driver's licence application is an agreement that organs be used for medical teaching and research.

Many would not be aware that an affirmative response on their driver's licence could be interpreted this widely and, to be fair, that is not the present practice.

Of more concern is the explanatory statement in the application that next-of-kin will be asked for their agreement to donate organs. There is no requirement under law for that to be done. The most required is that it not proceed if there is reason to believe the request was subsequently withdrawn.

If the thinking behind the explanatory statement in the licence was to give effect to this provision, it does not do so. Relatives were given no right of veto.

The legislative intent was that the wishes of the deceased must prevail. However, the interpretation that the family wishes can override the wishes of the deceased is the one that prevails. The donor website, run by the national donor co-ordinators, says that organs and tissue will not be retrieved if the family object and that the family can overrule the wishes of the deceased.

Organ donation practice, therefore, does not reflect organ donation law. One possible explanation is that an expression of willingness to donate organs in a driver's licence application is not seen as a request in terms of the Human Tissue Act.

The procedure where relatives are consulted is the procedure set out in the act for when no request has been made. The effect of that interpretation is to render of no legal weight the records held by the authority and the entire driver's licence organ-donation procedure.

It also makes it impossible to make a request in writing to be a donor and rely on that request being carried out after death. That is despite the act making it clear that the wishes of the deceased person will prevail if a written request has been made.

It may in practice be undesirable for the wishes of relatives to be ignored. In those situations, although no one would suggest that organ removal should proceed, it should be clear that the legislative intent was that the wishes of the deceased will prevail. This may affect the attitude of relatives.

The Human Tissue Act may be an outdated piece of law, having been enacted in 1964 when the only possible transplantations were corneas from dead bodies. There are different issues when the decision is being made to harvest organs from an individual who is braindead but on life support.

But it is possible for satisfactory procedures to be put in place in the present legislation and using the existing database.

The existence of lifetime licences makes it easy to ascertain the wishes of the deceased and a negative response should be given the weight that the deceased objected to organ removals.

The health and disability services consumers' rights regulation details the right of consumers to make an informed choice and give informed consent.

This reflects the increased awareness of the importance of informed consent since the Cartwright Inquiry. Informed consent is a process, not a one-off event, and can occur only where the consumer has been supplied with sufficient information in an understandable form.

A requirement to answer a question on organ donation on a driver's licence application form with almost no explanatory information is not complying with informed consent guidelines. Unsurprisingly, many people, uncertain about the effect of a positive response, answer no.

If the rate of organ donation is to be increased and correct procedures put in place, explanatory information must be provided with the driver's licence application form and perhaps mailed out to individuals before they renew their licences.

The misleading explanatory statement in the application form should be removed. The ability and the process involved to change status from a donor to a non-donor or vice-versa should be widely publicised and information on organ donation put on the authority's website.

Increasing the rate of organ donation from those who have made an informed and considered choice to be donors can only benefit society.

* Susan Watson is a senior lecturer in commercial law at the University of Auckland.