12 March 1991 - Current
Ms WARD (Eltham) (21:38:35) — This bill is about grief. It is about suffering, and it is about the recognition of the erosion of self that a terminal illness can bring. This bill exposes our grief and our sorrow at the loss of those we love. It exposes our heart. No matter on which side of this debate you fall you are debating here with your heart as well as with your head, because on this bill we vote according to our conscience.
I have thoroughly examined mine. When we love people we want them to stay with us. We want their physical presence in our lives. We want to touch their skin, feel their hair, hear their voice and see their smile. We do not want them to leave us. But this bill is not for those of us who grieve. It is not about those of us who will be left behind. It is about those who are dying and those who are suffering, and suffering is about more than pain.
Pain is a funny thing. It can be managed, it can be borne, it can niggle away, it can sometimes overwhelm. We all have different pain thresholds. Pain is hard to define. How do you rate pain from 1 to 10? In my research for this bill I found that it is not always pain that people seek to end. They seek to alleviate the overwhelming and sometimes unbearable grief that terminally ill patients can experience as they witness the brutal, ugly erosion of themselves.
In September 2008, while my small children filled the house with colour and movement on a Saturday morning, I sat down at my kitchen table with my teapot and with the luxury of a quiet moment I read the Age. I read a story that made me weep, as grief does, and as this story still does. I wept for a lost life, a young woman not much younger than I was, who died far too soon, a young woman who saw her life and her body dissolve in the pain and suffering of colon cancer, a young woman made wretched, her sense of self eroded and almost unrecognisable. She said:
I deeply admire people who rise above the adversity and their suffering. But I haven't grown from my illness or become a better person from its torments. All I want after 16 years of painful Crohn's disease and now cancer is to die a pain-free peaceful death.
The Age reported that her older brother, Damian, was with her in those final days, and he believed that she was still in pain despite massive doses of morphine and other painkillers. The paper reports that in her last hour he held a bowl under his sister's chin as she vomited faecal matter. This is the story of Angelique Flowers and her death.
Her story has clung to my brain, often hidden but never far away, regularly resurfacing, reminding me that there has to be a better way. So Angelique has been my touchstone. In my research, in letters, emails and cards I have read and in the conversations I have had, I have continued to bring myself back to the same question and to test my answer in each case. In each point that is raised in argument against this bill the question I have asked myself is: could I look Angelique in the face and say to her that she must continue to suffer? Each time I ask myself this question after a new point has been raised or a new view has been put forward or even in revising an opinion, I find that I could not. I believe that I do not have the right to tell someone that their suffering is not enough, that their suffering must continue. I cannot say that. I do not believe that all suffering brings enlightenment, brings peace or brings calm.
We have tremendous medical practitioners who deliver thoughtful, kind and loving palliative care. I congratulate the government for the leadership it has shown in increasing support for palliative care in this state. Yet sometimes palliative care is not enough. Sometimes, despite all of the best intentions, care and help, it is not enough, and this is what this bill addresses for those poor souls whose hearts are breaking at the loss of themselves, who cannot bear the pain, including the pain of no longer recognising themselves, and who are experiencing overwhelming grief at seeing themselves, the essence of who they are, being eroded.
Milan Kundera wrote of the unbearable lightness of being. This bill addresses the unbearable heaviness of non-being. This is seen in examples such as Research residents Angela and Neil, who wrote to me about their sister-in-law and told me of her experience at 37 with bowel cancer. They wrote, 'Being drugged into near insensibility in her final weeks, when she could not eat, could not toilet herself and was pretty much continually unconscious, was horrendous'. Or there is the lived experience of local resident Rick, who as a midwife and palliative care nurse said, 'I have seen many times — both professionally and, sadly, personally — the terrible pain and suffering that is sometimes not controlled through normal analgesia regimes and the torment those unfortunate few endure because our current laws do not allow for any other option'.
I must note that nurses working at the frontline of care have not contacted me opposing this bill. There is Greensborough resident Carol, who wrote to me:
I am 74 and in very good health at the moment. When I was 69, having been diagnosed with breast cancer, I had surgery, chemotherapy and radiation therapy, and I take ongoing medication. I lead a full and very happy life but always in the back of my mind is the thought that one day the cancer may return and at that time I may not be so lucky. I question why, if I find I am in unbearable pain and that to stay alive is torture to me, I should have to be dictated to by people whose religious beliefs I do not subscribe to.
I thank the Premier for the leadership he has shown in this policy area. I thank the Minister for Health, who came to my community forum on seniors wellbeing in 2015 and responded so thoughtfully and respectfully to entreaties by my local seniors, seniors in the Eltham electorate, who wanted this legislation created.
Death is distressing. It hurts us deeply. Allowing terminally ill people to have some control over their deaths I believe is important. We all deserve a good life, as we deserve a good death. I believe this bill is necessary, and for this reason, because I could not tell Angelique to keep suffering, I support this bill.