The concepts of dying well and a “good death” were once very popular. Everyone aimed to do this, and even expected it. It meant dying with dignity, with one’s loved ones around and at peace with the idea. Sadly this is often no longer a likely expectation.
Something has gone badly wrong. Medical science has extended our lives, and often improved their quality — but the end still comes, we may just take longer to get there. While medical miracles and improved technology can save us from the ravages of all sorts of illness and even death, we have not, as a society, kept up with the non-medical part of death and dying. In fact, there has been a creeping medicalisation of what really belongs in the largely personal worlds of ethics, morals, faith and philosophy.
As a person with metastatic cancer, and one who has worked on behalf of people affected by cancer for the past 11 years, I have watched and listened to the various arguments, trying to understand how we can arrive at an outcome which allows accommodation of all views; i.e. from those totally against assisted death choices to those who wish to face the end of their lives differently, with dignity and control. This accommodation must of course include safeguards against abuse — as achieved in other jurisdictions. It seems to me that we have succumbed to legislation which reflects the views of an influential few, and of those who fear that safeguards cannot be provide to protect the weak.
People who are facing the unrelenting and debilitating destruction of their quality of life should be able to make an informed decision about its continuance or not. They should be able to implement this decision by seeking expert assistance which is not prescribed by law as it presently is in our ethical backwater. Yes, we need a legislative change which reflects the needs and wishes of the many, yet respects the beliefs of those who do not agree. In this aspect the issue is quite similar to that of abortion — and most of the western world has come to accept its legalisation and the right of choice in one’s life.
As a civil society we expect people to make informed decisions all through life. We educate and encourage them to do this. We praise and commend patient autonomy in self management of illness and medical conditions, and indeed of our psychosocial state. But quite illogically, not at the end of life, when we are expected to submit to the preferences, religious beliefs and present legislation which negates all this, just when we need it most.
Did you know, that if you confide in a health professional employed by NSW Health, that you are thinking about taking control over the manner of your dying (ie away from the medical professions’ control), then he or she is legally required to refer you to a mental health team and a psychiatrist? The regulations reflect the view that anyone contemplating ending their own lives, for whatever reason, must be mentally unstable and in need of rescue by medication. How could we have arrived at such a situation, where one size is supposed to fit all? It feels like the nightmare worlds imagined by science fiction writers … How can the value of the individual’s self determination be so callously and inhumanely disregarded?
Because we have often handed the care of the dying to religious organisations, these beliefs may be implemented when we are least able to protest. There should be choice which includes a non-religious pathway open to all dying people who need care. A further consequence of religious management of palliative care is that medical specialists and care teams are expected to concur with the managers. This surely influences the training of palliative care specialists and teams.
The time has come when the personal or religious views of some, who are ideologically against any form of assisted death and who have held sway over the debate so far, should be recognised as just that — their view — and should definitely not be forced on those who do not have these beliefs. It strikes me that this is part of our basic freedoms. Every opinion poll since the 1980s has shown that a good majority of Australians want voluntary euthanasia legislation along the lines of the Netherlands and Oregon.
We know that our options for dying with dignity and control have been gradually reduced by the protective state. Many see this as an invasion of human rights. In Australia it has become impossible to access the “best” and most humane drugs — although we allow them for our four-footed friends. It is now almost illegal to think about ending your life in the manner you wish, let alone ask for assistance or advice from those competent and willing to provide the latter. Suicide is not illegal, but help is — does this really make sense?
Every year more western countries strive to unshackle themselves from the prejudices of previous generations. The list of successes includes the Netherlands, Switzerland, Belgium, Luxembourg, two American states — Oregon and Texas, and Albania. It was briefly legal in the Northem Territory. The Scottish Parliament will soon be considering the Proposed End of Life Choices (Scotland) Bill.
But for now we are supposed to feel more comfortable when the dying person loses autonomy, responsibility and respect, in order to satisfy the prejudices or fears of the few who have taken dignity and control from us. I for one, am dreading my dying days, but being an optimist and fully of sound mind, I remain hopeful that reason will prevail and the law will be changed so I can seek assistance when and if I need it. When that happens, the dread will vanish and I will approach my death with dignity and control.
Sally Crossing AM wrote this piece in advance of a public debate on euthanasia, to be held in Sydney on Feb 3