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Legislative Assembly for the ACT: 1997 Week 2 Hansard (26 February) . . Page.. 502 ..

MS McRAE (continuing):

of somehow wanting to diminish palliative care. I think that is an unfair labelling of a lot of people and it has nothing to do with the debate. Palliative care is there. It should be readily available, and freely available, to all who want it. It has nothing to do with this debate. What this debate has to do with is the dignity and individuality of people and their right to choose.

Mr Temporary Deputy Speaker, we can know about death only through grieving, through the shock of losing someone. That is how we understand death, because we are alive. We know the impact of death on only ourselves and our friends. We experience death through watching it in respect of other individuals; but we as individuals know it only through grieving, and thus can imagine death only by its impact on the people that we most love and the people that we have most contact with. I think that that is forgotten and, again, in the course of the debate, people are put into a category of somehow being wrong to be concerned about the people who will remain after you have died when you are deciding whether to live or die when you have a terminal illness.

I absolutely and fundamentally respect the right of each of us to be more profoundly concerned about those who are left behind than about ourselves, because that is what we know of death. We know individually what happens when somebody that we care about deeply dies. Because we know that, because we live as a network of interconnected, sharing human beings, we cannot walk away from that understanding of what our personal pain and suffering and our closeness to death are doing to other people. I do not accept that somehow it is improper or wrong or bad for anyone to be considering their illness, their situation, in the context of those that are around them. I think that people who choose not to go through prolonged and undignified suffering have the right to do that, on the basis that they know what the impact of that is on the people that they care about most.

For many people, the dignity and focus of their entire lives has been what they could do for others. It has been how they could best support, give, share and ensure that others around them are able to live their lives fully. Those people must have the right, when facing death, to continue in their own way, to die as they have lived - with greater concern for everyone else than for themselves. During the course of the debate I find that that has been belittled, and I want to put on record how important I believe that aspect of this debate should be.

I believe that this Bill deals with some fundamental tenets of what being a deeply caring human being is about. That means that it puts some responsibilities on those who care for people with terminal illnesses to actually accept what is in front of them - which is profound and undignified suffering, which is a situation that the terminally ill person does not seek to be in - and accept the responsibility, as an observer, that maybe they have some role in alleviating that extent of suffering. As I said before, I hope that, in at least 99.99 per cent of those cases, that responsibility is played out in the way that it is played out now with very good palliative care. But the reality of life and death is that that is not the situation for every individual. I think that part of our responsibility as human beings is facing that awesome responsibility of what you do when someone is in a situation of profound suffering.

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