Jenny McAllister (NSW, Australian Labor Party) Share this | Hansard source

I rise today because I believe that we all have the right to die with dignity. There are no easy decisions at the end of life, and they are decisions that no-one makes lightly. They are the most personal of decisions. I want to be clear from the outset, I support legislative reform to enable voluntary assisted dying under certain circumstances.

When terminal illness has already taken away so much from someone, I don't believe that it's our place to then take away their ability to choose their final moments. This bill does not ask us to consider how best to proceed with such a reform, nor does it commit this parliament to such a reform. This bill merely asks us to remove the prohibitions introduced in the nineties which prevent the ACT and the Northern Territory from undertaking these reforms. I support the rights of the territories in this regard. I note that debates about voluntary assisted dying have taken place in a number of state jurisdictions, with varying outcomes, and I see no reason to deny the territories the right to conduct the same debate. Nonetheless, I wish to place on record some views about voluntary assisted dying.

All of us have heard heartbreaking stories about people whose final decisions have been denied to them. These stories are powerful and they speak for themselves. They form the basis for my conviction that voluntary assisted dying ought to be available to those who truly suffer and for whom there is no meaningful pathway to ease suffering as they approach death. In my own life I've been close to those who've suffered through terminal illness over long periods of time. Both of my grandmothers passed away after long struggles with dementia. I don't know how either of them viewed their choices as they struggled with this bitter disease, but these experiences have certainly shaped my own views about the end of life and the way that we support those who are dying.

A far greater range of choices needs to be available to those facing death, and I do not restrict my remarks to voluntary assisted dying. Indeed, I think it's essential that we view this as part of a spectrum of end-of-life choices. People should have a right to choose how they spend their final moments, but I also think that people should have the right to choose how to spend their final months. In order for this to be a real and meaningful choice we need to make palliative and at-home care available, affordable and accessible, and at the moment it really isn't. Australians are not spending their final days where or how they wish. Our intentions are clear. Surveys show that around 70 per cent of Australians want to die at home—however, just under 15 per cent of us will get to do that. It is one of the lowest rates in the OECD. Instead, half of Australians will die in hospitals, with another third dying in aged-care facilities.

It doesn't have to be this way. These deaths are not unexpected. Somewhere in the region of 150,000 Australians die every year, and most of these people are between the ages of 75 and 95. Their deaths come often after a marked period of physical and mental decline. It is only the precise timing of these deaths that is unpredictable. When death is robbed of the element of surprise, we have the chance to choose how to meet it, and we should give people the opportunity to make these decisions. This means listening with empathy. It means having honest conversations with people who are facing the end of their lives about what it is that they want.

I know that many health professionals already navigate this very difficult terrain with sensitivity and with empathy. But there needs to be a capacity for our health system as a whole to recognise and accommodate the wide range of needs and desires that different people may have. On being diagnosed with a terminal illness, some people may want to avail themselves of every treatment that modern medicine can offer them. Others may prefer to spend their final weeks at home, even at the cost of some treatment and care options. We need to accept that there is no standard answer to the final question. Instead, we need to listen carefully to people who by reason of illness or old age are facing the end stages of their lives and we need to accept with compassion what they say.

I don't pretend that this is easy. It involves all of us accepting the decisions that are made by our loved ones—decisions not to be resuscitated or decisions to refuse treatment. It also involves doctors and care providers having honest and skilful conversations with patients about the options they have in circumstances where not a single one of those options is good. It will involve us as a society providing the funding to allow people to have the choices that they want, building and funding the healthcare infrastructure that will allow the 70 per cent of us who want to die at home to do so with dignity. These are ambitions to be realised through another piece of legislation—quite possibly, in some regards, in a separate parliament.

I said earlier that this bill does not require us to debate or construct the exact mechanism by which euthanasia may be offered, nor does it require us to remodel how hospitals, hospices and palliative care facilities interact with patients. But we shouldn't lose sight of context: we should have the choice to die with dignity. But it is not only the end-of-life decision we should be allowed to make. Our challenge is to craft a health system that is built with humanity and compassion and that gives all of us autonomy over our final months, not just our final moments.