Page 451 - Week 02 - Wednesday, 19 February 2020
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The second aspect is that the family does not need to seek to have this recognition at a particular point in time; these opportunities are not time limited. This bill proposes that these opportunities for acknowledgement can apply in relation to a deceased person who was a tissue donor and whose death is, or is to be, registered under this act.
What this means in practice is that the family can make these requests for acknowledgements soon after the death has occurred, but also at a later date if they wish. No urgency is required in the decision about the acknowledgement. This provision also means that families in the ACT whose deceased loved one was an organ or tissue donor in the past will, if they wish, be able to have the death register updated to reflect this and, in turn, apply for an updated death certificate and seek an acknowledgement letter from the Chief Minister. These acknowledgement opportunities being optional, entirely up to the family and not time limited gives the family control and agency in deciding if, how and when they wish to have their loved one’s donation recognised. It is entirely in the family’s hands to decide what is appropriate for them.
Before I go to my concluding remarks, I want to briefly address some technical issues and questions that arise from this bill. The first is the question of privacy and having the tissue donor included on the register and having the Chief Minister receive these details. Because it is the family which makes one or both of the requests, and because it is done voluntarily only, the number of people with whom this information is shared is limited. The number of people who have access to the death register is also limited for a significant time period.
Second, I want to clarify that this bill does not cover body donations for medical purposes. I understand that institutions which receive body donations subscribe to consistent, national confidentiality standards and it appears that including body donations in this bill would require these institutions to step outside these standards, and that would require a longer conversation.
Third, because of the nature of the act that the bill is amending, the bill does not provide for circumstances where a next of kin only wants to receive an acknowledgement letter from the Chief Minister. The bill provides for the letter where the next of kin has first requested the acknowledgement on the death register. But there is nothing stopping the Chief Minister from establishing his own arrangement, whereby he is able to receive requests for an acknowledgement letter only, and this can be done outside legislation and communicated to families. So, at the conclusion of this speech, I will be writing to the Chief Minister to ask him to create this arrangement to sit beside this legislation in the event that the legislation passes.
Finally, the bill does not provide for what might be appropriate in an acknowledgement letter from the Chief Minister. Given the significance of the letter, and what it may mean for families, I will also be writing to the Chief Minister seeking that he engage with donor families and other stakeholders on what text might appropriately be included in letters that are written, so that the significance of the decision and donation might best be reflected in the most meaningful way.
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