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2019 may be the year when euthanasia is finally legal, giving us the opportunity to choose. The end, and our version of it, has been a long time coming.
If I can trouble you with a prediction, I would say that 2019 is shaping up to be the year of death. No, not like that (I hope). What I mean is that there are so many moments that death will be on the agenda, that all of us will be forced at one time or another to think about it. Dying will be the new black, as it were. And I have been preparing. First of all, I am seriously contemplating moving to Victoria. Or, if that is at all possible, becoming a resident in both states.
The main reason is that from June, Victoria’s Assisted Dying legislation will come into force. Maybe you remember: in November 2017, Victoria became the first state in Australia to allow its citizens the right to request a lethal drug to end their lives. After more than 100 hours of debate and the promise of 68 safeguards, first the Upper House and then the Lower House consented to the will of the people.
From 2007, between 66% and 85% of Australians have shown support for euthanasia, but it has been impossible so far for politicians to translate this into actual policy. In fact, in the same month that Victoria took the lead, a similar proposal was narrowly defeated in NSW, with 19 votes against 20. In other states, too, dozens of bills have been debated over time, but rejected. In 2016, for instance, the Death with Dignity Bill came in front of the South Australian assembly for the fifteenth time, but was defeated by one vote, the Speaker’s. In 2013, Tasmania had voted 13-11 against, repeating that in 2016.
The Victorian decision has broken the drought in the euthanasia/assisted dying debate that we have been having since 1995. Because although it is the first state to allow the practice, a similar option was already available in the Northern Territory more than 20 years ago. You know the story: because territories can be overruled by the Feds, they lost the privilege after nine months, when the Howard government voided the law.
That can not happen in Victoria, but that does not mean that there are no discussions about it. Despite all those safeguards, experts are afraid that the right of health professionals to object will clash with equal access to the service by patients. Medico’s, of course, can refuse to be involved. St Vincent’s Hospital in Melbourne, for instance, has already done so. For patients, it can become a “lottery”, an endless bout of doctor shopping. And for doctors and nurses, a wrench—especially if they work in teams who disagree internally. Nevertheless, at least something is possible in Victoria (for Victorians only!), which is more than can be said of NSW.
Most have an Advance Care Directive in their drawers, and most choose to forgo high-intensity care at the end. Despite the fact that they know that 80% of patients want the same, without something in writing they will often override those wishes.
Although, that is not really true. Other states are slowly coming along. In WA, a parliamentary committee has recommended new laws similar to Victoria. In Queensland a parliamentary inquiry has started. The ACT is hearing submissions to the Inquiry into End of Life Choices. And Trevor Khan, the Nationals MP whose private members bill was narrowly defeated in 2017, has vowed to reintroduce it in 2019. Also in 2019, a research project is about to start at UTS’ Centre for Health Economics and Evaluation. At the heart is a simple question: what should end of life look like? It is not looking at euthanasia or doctor-assisted dying, but at the last phase of our lives in general. What do we want to happen then, and what don’t we? Do we want to prolong our lives despite their quality, or not? What do we think about care, dying at home and the balance between autonomy and dependence?
They are questions that have become topics of more and more books as well, often written by doctors who have seen too many people die in agony. One of them is Charlie Corke, an intensive care specialist, president of the College of Intensive Care of Australia and New Zealand, and the regional clinical lead for the Advance Care Planning Program. He wrote Letting Go: How to Plan for a Good Death last year, a book that urges you to plan ahead. What do you want, what is too far or not far enough, what do your loved ones want and does that clash, what can you put in place now to make sure they don’t ignore your wishes, and how can you maintain your dignity at the end? Of course, there are Advance Care Directives, legal documents that make your wishes clear and cannot be overruled by either doctors or family members. But a lot of people only think about those when it is too late. So Corke has started the MyValues website. There you answer a number of questions that together form your MyValuesReport. You can send it to your doctor and your kin, so they know what your ideas are. Because it is an online form, it is easily done, and although it is not (yet) legally binding, “medical professionals, acting prudently, could be expected to comply with your expressed wishes”.
It will help you, and especially your doctors, who are, Corke says, “trained to fight, to act, to do something”. Without a plan, he warns, doctors will continue to treat a patient, often despite pain and suffering. That is why you need to take control, and follow the doctors themselves. Most of them have an Advance Care Directive in their drawers, and most of them—88.3%—choose to forgo high-intensity care at the end. Despite the fact that they know that 80% of patients want the same, without something in writing they will often override those wishes. So, while we watch the pollies fight over euthanasia and legalities, while we witness the first Victorians die legally and peacefully, while half of Australia will wonder about the possibilities of becoming a resident of two states, while there are courageous men and women MPs putting themselves and their reputations on the line with private members bills, while all of this is happening, let me make 2019 the year of thinking about dying. And planning now before it is too late.
In the meantime, I think I’ll go in search of that shack at Tallangatta. View of Lake Hume, close to the border. Literally, the best of both worlds.