Hansard debates

Kim O’KEEFFE (Shepparton) (21:28): I want to begin by acknowledging the many contributions that have been made in the house today, and in particular the member for Pakenham for her amazing contribution. She continues to inspire me in so many ways with her courage, her remarkable strength and her determination, which are making such a significant difference to many.

This is a sensitive but a very important bill being debated before us today. The bill introduces 13 ‍proposed amendments to the Voluntary Assisted Dying Act, which was introduced in 2017 and came into effect in 2019. I was not in this place when the legislation was first debated, but I do recall it happening at the time. The five-year review into the operation of the Voluntary Assisted Dying Act found the VAD act is operating as intended, providing a safe and compassionate end-of-life choice to eligible Victorians. However, the review identified some processes and safeguards having the unintended effect of impeding access to VAD. The review involved 11 focus groups. In response to feedback from the five-year review, this bill addresses a number of access barriers and unintended consequences flowing from the VAD act. The amendments set out in the bill seek to uphold the rights of persons who face death because of an incurable disease, illness or medical condition to live their lives with freedom and dignity while at the same time retaining the necessary safeguards to prevent any potential exploitation or abuse arising in the context of voluntary assisted dying, ensuring confidence in the operation of the VAD act. All five-year review recommendations to improve the operation of the VAD in Victoria have been accepted. Although the scope of the five-year review did not include reviewing the act itself, many stakeholders expressed views that some elements of the act were resulting in unintended consequences, creating barriers to the equitable access to VAD.

The bill builds on what VAD is about. It offers choice – not about whether to die but how, where and with whom. The act seeks to achieve the appropriate balance between ensuring all Victorians have access to high-quality end-of-life care consistent with their preferences while requiring robust eligibility criteria to protect against the abuse of vulnerable persons at the end of their life. The bill is not a departure from the values and principles that underpin VAD; rather it reaffirms them. It is about compassion, it is about autonomy and it is about recognising that for some people, despite the best palliative care, suffering remains, and it is about ensuring that those people are not left on the margins of our system. We must ensure the important legislative safeguards are in place, and there are many amendments that have been put forward today to be considered. It is very interesting listening to many, and some align with each other.

The bill builds on what VAD is about. It is about choice and offers choice – not about whether to die but how, where and with whom. VAD has allowed people to choose the setting of their final moments at home, in hospital or where they felt most at peace. It has given families the chance to say goodbye with grace, to be present, to support and to honour the wishes of someone they love. There will be differences of opinion, whether that be religious beliefs or personal opinion. Everyone has the right to have a view, a say and a choice, and every view and contribution should be respected. It is a highly sensitive matter, and it can be very distressful for some. Many in this place have shared their own personal stories, and it brings us to the very core of why we are here: to make sure that what we have in place is working and that it meets the needs of the patient and their family at the most difficult of times, should VAD be the patient’s choice, but also that the medical sector are considered and included with correct legislation, processes and guidance in place.

But for some, access has had barriers, and I have seen firsthand the devastation when a decision has been made to access VAD, then to find out you do not meet the criteria. In July this year I lost a very close friend, Maxine, to MND. The member for Pakenham spoke of Maxine’s experience in her contribution. I want to thank the member for Pakenham, Emma, for the kindness, friendship and support that she gave to Maxine. Maxine spoke to me about her decision to access VAD. It is heart-wrenching to discuss someone’s end-of-life wishes and how they want that to happen, particularly when they ask you to be present. The reality was there was no hope or cure for Maxine. It gave Maxine a sense of control in how she could do this her way. She was always so organised, so bright, so vibrant and so active and used to getting her own way. She was declining fast. Experiencing Maxine’s journey firsthand, the challenges that she and her husband Damien endured, was a true insight into why this legislation needs to be changed and why we need to get it right.

A barrier that Maxine experienced was that, while she was a permanent resident for over 50 years, she was not an Australian citizen and was shocked to discover that would mean that she did not meet the criteria to access VAD. Maxine was born in New Zealand. She was told that she would need to apply for Australian citizenship. One of the changes in this bill is that you will only have to be an Australian permanent resident for three-plus years. Maxine sadly ran out of time. Our federal member was running around trying to work out how we could get her citizenship fast-tracked. For about three weeks it was a constant, just trying to work through this process, but as I said, she ran out of time and sadly she passed away. Whilst her mind was active, she was trapped in her body, which had no movement. She was on a feeding tube and could not talk. She declined, as I said, very quickly, and she sadly passed away. Her choice would have been to be alert and to feel the love and the comfort around her. That did not happen. She passed away in a condition that she did not want to get to and she did not want her husband and family and friends to go through. Maxine was well aware of her circumstances, her condition, and able to make a conscious decision. It is people sick and suffering like Maxine that should have the right to VAD.

I also wish to acknowledge Jane Simpson, who is an MND advocate and a support to many with MND. She was a wonderful support to Maxine, and I know she is also being a very good support to the member for Pakenham. I also wish to acknowledge Maxine’s husband Damien, who has been incredible during the most difficult of times, and we both miss her dearly. I have been in contact with Jane these past few days, and Jane said too many times she has seen terminally ill patients pass away while struggling to access VAD and how heartbreaking it had been for them and their families. Jane is very happy to see some of those impediments lifted through this bill.

I also had the experience of my mother going into palliative care after a six-month term with cancer, and I want to acknowledge the incredible medical team that was available to us 24/7. My mum did choose to have palliative care at home, and to some extent she did do it her way and she was very, very supported. But it was still very sad to see her decline in front of us all.

Since VAD was introduced in 2017, it has been a journey. Since that time we have heard that Victoria needs to catch up to the rest of Australia. We have listened intently and respectfully to people with lived experience, families of people who have accessed VAD, clinicians and advocates, and people and organisations that oppose VAD. We have also studied the implementation of similar legislation in other Australian jurisdictions, including Queensland, Western Australia, Tasmania and New South Wales. Like these states, we recognise that this is not a choice between life and death; rather, it is an additional end-of-life option for those who are already dying and want to end their suffering. We know that living in regional Victoria also has had many barriers when it comes to accessing VAD, and some of the proposed changes could make a positive difference. We need to remove unnecessary barriers and make VAD more accessible for all, no matter where you live.

I would like to touch on a couple of things with the last few minutes I have. The removal of the gag clause will mean that registered health practitioners, including doctors, nurses and allied health professionals, can now initiate discussions about VAD during their end-of-life care conversations. They must also discuss other options like palliative care and refer patients to appropriate support. There have been some concerns that a medical practitioner may not want to discuss VAD, and as I see it, that could be quite challenging. Whilst this approach does not compel anyone to participate in the VAD process and ensures patients are not left uninformed or obstructed from accessing legal care, I do question how a doctor who does not support VAD – whether it be for their faith, cultural background or whatever reason – can be managed.

Another thing of concern that has been addressed in the bill is that if a family member is actually also included in the process, there will be protections in place, through some of the legislation that is before us today, to make sure that they are the right people making these decisions and are not benefiting from someone that is trying to access VAD.

Just in the final minute, I think it is a really important piece of legislation. I think from going through the experience that I have been through, it is always about not just an individual but the whole of community. I am really looking forward to hearing some of the discussions and some of the responses to the questions on some of the amendments. I will finish my contribution there.