HARRIET’S SPEECH ON VOLUNTARY ASSISTED DYING FRIDAY, 3RD NOVEMBER, 2017
Ms SHING (Eastern Victoria) (14:34:18) — I rise today to speak on the Voluntary Assisted Dying Bill 2017, and in doing so I want to begin by acknowledging the vast number of contributions that have been made to elected representatives, including me, in the course of this particular debate. We have seen an extensive parliamentary inquiry. We have seen an expert medical panel’s consideration and report, which culminated in recommendations which have been adopted as the basis for this bill.
The nature of the conscience vote afforded to government members in this particular vote is one which I, along with everyone else, have taken exceptionally seriously. In combining the concept of conscience with the role that we have as an elected representative, I have engaged in numerous discussions and conversations with medical practitioners, with ethicists, with community members and with organisations. I have spoken to people who have lost the ones that they love, those who are in the process of losing the ones that they love and those who are facing that journey alone into death themselves — a journey where, despite all of our best efforts, we can only accompany those we love and care for to a certain point.
I am indebted to the many thousands of people across Victoria who have gotten in touch to share their views. My conscience on this matter is infused and informed by those views and by the matters which you have brought to my attention, as you have to the attention of other members in this place and in the Legislative Assembly.
At the outset I want to say that I am so sorry for the grief that has been caused to those who have contemplated dying alone and to the families of those left behind when people have taken their own lives, often in difficult, brutal, violent circumstances. I am so sorry that they were denied dignity, that they were denied comfort. I am so sorry that amidst the walk into death they needed to take steps alone to avoid criminal sanctions and the repercussions associated with being surrounded by loved ones in that final step to cross the Rubicon.
What I want to focus on today are the philosophical and legal components of the bill and the way in which we must necessarily combine those, like oil and water, with the intersection into morality, into religious belief, into the social contract that all agree to, underpinned in large part by the concept of doing no harm, by the concept of doing unto others as we would have them do unto us, and of the concepts of free will, of autonomy and of self-determination.
What we have here in this bill is a set of circumstances that for us here, unless we are ourselves dying, are at their highest hypothetical. We cannot know until such time as we embark upon our own journey toward death how it is that we will feel about prioritising free will and self-determination on the one hand or allowing the processes of physiological decay and decline to determine the time and place of our death on the other. In this sense the task that we have been charged with in examining this bill is one which is full of contradictions. It is full of the need to intersect intellect, philosophy, jurisprudence, law, ethics, medical practice, palliation, technology, community, grief and loss.
The love, however, that sits at the very heart of this debate is what has pulled people in all the directions that we have discussed in the course of this debate — love for our family members, love for our fellow community members, love for those we care about, love for those who will come after us — in needing to ensure that safeguards are adequate. Again, there is the love for those whose pain is intolerable, love for those who are suffering unbearably, love for those who are on a journey that we can but hopelessly and helplessly watch through and with.
I want to talk about the messiness of this conversation that we are having, the necessary messiness of what we are talking about. The beginning of life is not, as many public discourses would have us believe, a sanitised, perfect tale of a stork visiting a family. Birth is difficult. Anyone who has ever been in a labour suite, who has ever given birth themselves or who has ever accompanied someone as she gave birth knows that this process is about bodily fluids on floors and on hands. It is about screaming, it is about noise and it is about viscera. It is about opening our appreciation of life into something which is far more vast and far more enormous than the ‘every day of our lives’ would usually allow us to consider.
Then we are presented with a tiny, fragile, initially limp, but then after poking and prodding and rubbing, bundle covered in vernix and mystery. The smells and the beeps and the glints of needles and vials surround us, and we know that a journey has begun. It is not often an easy journey — sometimes it is violent, sometimes it is fragile — but in that moment we can have a true sense and a true understanding of the miraculousness of it all.
We know about the expectations associated with beginning on that path through childhood, adolescence, adulthood into — hopefully, all going well — maturation, old age and death. It does not always work out that way — we know that; death comes cruelly and often and unpredictably — but in a range of circumstances associated with chronic disease or illness of the nature contemplated by this bill there can often be impossibly heavy and difficult pain. The pain associated with terminal decline is inevitable for many who suffer from specific conditions. What happens when we see people in terminal decline, however, is much the same as the siloing which occurs after the initial birth — after the viscera has been cleaned up, after the medical bills have been settled, after a bunny-rug has been presented and a tale of a stork and a Facebook announcement are given to family and friends: ‘Mum and bub doing well’.
What we see with death is the extension of sympathy, the extension of grief and of loss. It is easy and it is convenient for us to sanitise, to cleanse and to ignore the messiness of it all. It is comfortable for us to do that. It is an easy conversation to talk in euphemisms about life and about death, because for all of our faults we are charged in our core with an innate desire to live and to survive. Our physiology is geared this way.
What we have, however, is the need to make sure in this bill and in this debate and in this conversation that we talk about death — that we talk about death and give it the same degree of weight as we do to other parts of the life experience that we all too often sanitise, that we all too often compartmentalise and that we will all too often cloak in euphemism. We have a fear of dying. We have a fear of our own mortality. It is though even talking about it can conjure up the manifestation of an earlier demise than we might want. We are considered to have lived a successful life and to have enjoyed a good innings if we make it to 80 or to 90, to have had the richness of experience which we understand and expect to be part of contribution and of benefit and that social contract that I referred to earlier. We enjoy health care for ailments and illnesses as they arise, but inevitably many will get to the point where terminal decline, palliation and palliative care and treatment are a necessary part of the continuation of that life journey.
Medicine is not a precise art. It relies upon the relationship between doctor and patient, between healthcare practitioner and client, and between family members and people associated with a patient to come together. The nature of reading the instinctual cues that are part and parcel of good medical practice, of good patient bed manner, is something that separates the best of our doctors from those who are still learning. What we do know is that medical technology and medical treatment are continuing to make advances every day. We do need to make sure, however, that we never forget that medicine does not always get it right, that our medical practitioners and the very best of care will not always be enough and that it is not always a precise science that will deliver a guaranteed outcome as a consequence of specific treatment.
In the course of this particular issue being debated and considered by the Parliament and by the expert medical panel, one of the things that I have touched on extensively in my discussions has been to better understand the coexistence of multiple diagnoses, including but not limited to mental illness. It is no surprise that people suffering from serious illness and disease will commonly have depression. It is no surprise to note, however, that in a situation where there are multiple presentations a doctor and a healthcare worker and a palliation specialist will in fact take care of the necessary treatments to make sure that the health and wellbeing of that patient are taken care of to the very best extent possible.
I am confident that the safeguards in that regard that are set out in this bill are adequate to cover the coexistence of mental illness in a way that sits alongside a serious illness or disease, and I am confident, because of the oath which is taken by our medical practitioners and the seriousness with which our healthcare practitioners take their role, that the care that is provided in palliative care and the care that is provided in general health care includes the health and the wellbeing of the mind of the patient and that, where necessary, treatment for any depression, anxiety or imbalance is part and parcel of that treatment plan.
Much has been said in the course of this debate about the comfort derived from being able to exercise an opportunity to end one’s life where a patient has received a terminal diagnosis under specific circumstances and for a limited range of reasons. I have read very, very carefully a number of reviews and research papers that deal with the sheer comfort derived from the capacity to access a substance that will enable one to prematurely or to pre-emptively end their life, and in many cases — often up to 30 per cent of cases — that substance will not be used. I am satisfied based on the detail in the bill, based on the safeguards and based on what has been said in the Legislative Assembly in relation to this debate that the way in which this substance will be provided, will be accessible and must be contained is adequate and is appropriate in the circumstances.
I now get to the personal nature of my contribution. In this regard I have not spoken very often about my late brother, Patrick. Today seems as good an opportunity as any. My brother Patrick was 39 when he was diagnosed with prostate cancer. This time two years ago I combined the everyday of my job, of my work — of coming here to Parliament and participating in the legislative process — with going to his small flat in Parkville to provide care for him as he lay dying. His prostate cancer was a particularly aggressive version. He rewrote the medical books. He was a surprise to everyone.
He went so quickly from running marathons, from practising as a lawyer and from writing, in a sweet coincidence, a pre-doctoral essay for Oxford on free will and self-determination — he went from being one of the smartest, most assertive and most philosophical and ethical minds that you could ever meet, an active participant, a man whose road racing records still stand in the outer eastern suburbs — to someone whose body was ravaged. Prostate cancer loves bone — it loves bone in the way that fire loves kindling — and it eats it. My brother was eaten by this cancer. It came up his legs. It removed his ability to move. He became bedridden. It made its way up his spine, into his neck and around his skull.
I watched his decay and his decline, and every day and every night my family and I would return to his little flat in Parkville and we would provide him with the best care that we thought we could, along with the excellent assistance of palliative care teams and his specialist team of doctors. But we were helpless, and we were hopeless because there are certain pains that cannot be treated or alleviated with the very best of the medications, of the analgesics and of the sedatives that are available. Bone pain is one of those pains. Nerve pain is another. As my brother lay dying with his useless legs and his view out to Princess Park, we provided him with everything that we possibly could, knowing that that was not enough. The best pain medication that he had turned out not to be morphine, because it did not provide him with the relief that he needed; the best pain medication that he had ultimately turned out to be Nurofen, a low-level anti-inflammatory.
He busied his time and his days with the slow movement from task to task. Time stopped being about the clock that we use in our busy everyday, and for him and for us it became about moving from health task to health task of bedpans, of changing sheets, of tubes, of cleaning, of rest, of making sure that he could fulfil his own wishes as they related to letters of farewell, as they related to making sure that his own desire for the thoughts and the work that he had put in to better understand free will and self-determination could go on.
He charged me, rather unfortunately for me, with the task of finishing off his pre-doctoral essay for Oxford on free will and self-determination, and I cannot hope to finish it. I cannot hope to finish it because, for me, the issue of free will and self-determination can only ever be written by the person who is at the heart of that particular issue. That essay is his, and it is half written and it will always be half written. There is no amount of footnotes that can in fact involve two authors in what it was that he was in the middle of creating when he died.
So we nursed him around the clock, and I would come here and I would be within the throes and the banality of everyday life, within time frames that are understood to be clean and sanitised and proper and good and all about the primacy of living, and then I would return to him, to the two top shelves of his refrigerator filled with more serious medication than anyone could ever wish to have contact with, and I would change him and I would talk to him and I would read to him, and this is the closest that I have ever been. Even then, it is still a hypothetical for me because that was his experience.
The banality of all of this, the ordinariness of all of this, of my experience of grief, of his experience of death, is also something which warrants consideration, because there are thousands and thousands of people around Victoria who have been through this journey themselves, who are in the process of going on this journey or who are yet to encounter it themselves but know that it is imminent.
Patrick wrote a care plan, and it was contained in four pages as a pro forma document. He wrote it in his spidery handwriting that became shakier as the days went on, and it was stuck on his door with small dabs of Blu-Tack. He wrote that, of the things he most valued in life, independence, control, comfort, purpose and relevance were his priorities. I have to say in this regard that they are fine priorities, and as a hypothetical, I would enjoy them myself. In answer to the question, ‘Things I would like known that may help with future medical decisions, including situations that I would find overly burdensome in relation to health care and/or specific treatments that I would not want’, Patrick wrote, ‘To live in pain, to live without purpose, to be a burden on friends and family, to live without being able to make a contribution, to be bored, to prolong life unnecessarily’.
There is no amount of academic discourse that can enable us to gain the sort of insight that can only be gained when we are on this journey ourselves. There is no amount of work that can ever make a system such as that being proposed in this bill absolutely foolproof, but to live in the shadow of fear and to be so intimidated and so hesitant about progress to ease suffering would in fact deny so many thousands the right to a good death, the right to not die alone, the right to die on one’s own terms.
I cannot think of how I would want to die in a situation akin to my brother’s. I cannot because I do not know the nature of the intolerable suffering that he had, and I cannot because the nature of intolerable suffering is so subjective. I used to hear him weeping at night in his room when he thought that I could not hear. In grief and in loss and in sadness, he watched his body decline and he felt the loss of words that usually came so easily and so beautifully to his tongue — he felt them disappear. And on 18 December 2015, on a blazing hot day, he died just after 10 o’clock in the morning. And then after the shock of us walking right to the edge of that end of life in the same way that so many do at the beginning of life in a birthing suite amidst that mess and that chaos, we sat in shock, wondering what to do next. I remember thinking that for a 42-year-old man he looked so much like the little baby that he had once been, and at last his face that I had gauged for pain signals for so long was unlined.
Then, once the initial shock had worn off, the normality crept back in and we needed to clean and we needed to make arrangements — making arrangements, the nature of euphemism again. To make arrangements while every sinew in your body is crying out with loss and with love and with anger and with rage. There has to be a better way; there has to be a better way to talk about death; there has to be a better way to minimise suffering. I appreciate that I am going over time but I will ask for a couple more minutes indulgence if I may.
Ms SHING — We need our lives to count for something. When I came here I was resolute that the nature of my contribution here would be the best that I could possibly provide.
I made a commitment to myself that I would do my best to be a signpost rather than a weathervane and to bring intestinal fortitude and authenticity to this role. This conscience vote has allowed me to do it. This conscience vote has allowed me to understand in fact that this is not about me, as so many other speakers have said. It is not about my brother. It is not about anything more than doing our best to come up with a hypothetical solution and a set of circumstances that can alleviate the pain of those who most deserve the choice, to prioritise free will and self-determination. In this regard all we can do as parliamentarians is our best. All we can do as human beings who are trying to combine the oil and water of legislation and law on the one hand with human emotion on the other is our best.
I want to commend this bill to the house. I want to commend everyone who has made such profound contributions to this debate. I want to commend those who have brave in talking about death. I want to urge you to continue, because this is how we do our best as a society in all of the obligations that we carry, right through from that bundle of joy and mystery at the beginning of life to the end of it all in a hospital bed, with a small curled hand around yours. I commend the bill to the house.