A good death must be our choice

Euthanasia, εὐθανασία, means good death, from the Greek ‘εὖ,’ meaning ‘well’ or good,’ and ‘θάνατος,’ meaning ‘death.’

When the time comes, I would prefer a ‘good death.’ My idea of a ‘good death’ is open, and depends on the circumstances – it could be a ‘natural’ death, if I am lucky enough to have robust health into old age; or an ‘assisted’ death, if my mind or body fails me in a way that becomes too degrading or painful, robbing me of my human dignity.

I am still young, and thankfully healthy, but for a long time now I held the strong personal view that the timing and circumstances of my death should be fully under my control. The concepts of personal liberty and autonomy become utterly meaningless if I am unable to determine the timing and circumstances of my death, when not having that control over myself would compromise my dignity.

That conviction was strengthened recently as I am watching someone close to me, slowly fade away from a combination of dementia and Parkinson’s disease.

He is still with us, alternating between blissfully happy and utterly unaware. He hasn’t made any formal arrangements regarding his end of life care, and I don’t know what choices he would have made had he been given an opportunity to do so. I don’t think his generation thought about such issues much.

From what I know of him, I believe he probably would have chosen to fight on, live on, and receive the best possible care, including palliative care, until the end. And that is what’s happening for him, and that is his choice, and his right.

I take a very different position on the subject of death, but culture and society have changed significantly over the past few decades, in the process changing how we view death.

If I am ever diagnosed with an illness that would eventually rob me of my identity and cognitive functions, or cause me unbearable pain, I would like my personal choices to include the option of being spared the indignity, or the pain, and slip away peacefully at a time of my choosing.

I am of the firm view that I should have the right to make that decision. To me, voluntary euthanasia is not an ‘easy way’ out, but a valuable option that should be available if my circumstances require it. Unfortunately, there are strong legal limitations on what’s available to an individual when it comes to end of life decision-making and death, for now.

If you decide to make plans within the legal framework available, the matter should always be discussed with your family, and next of kin. Such a discussion is never easy, but if you wish to retain as much control over your end of life arrangements, and death, as possible, it’s a conversation you must have. You will also need to capture your end of life health care direction in writing.

For example, I discussed this matter with my partner, and prepared a detailed Advanced Health Care Directive (AHCD), also known as a ‘living will,’ together with an Enduring Power of Guardian, which details my wishes in the event I would lose capacity to make decisions for myself.

Of course, even in death, and subject to individual circumstances, one should try to make an effort not to be ‘selfish’ if possible, and should think of the loved ones left behind, who are also on a harrowing emotional journey of their own with a sick and dying loved one, and are left to process, and live with, a loved one’s death. My AHCD addresses this issue by allowing my partner as much time as is necessary in the circumstances to come to terms with letting me go.

Unfortunately, there is no legislation in New South Wales that would provide for statutory AHCDs, or for a standard form, therefore common law principles are applicable to such documents.

An AHCD prepared in New South Wales may have legal effect, provided it satisfies certain criteria, including:

  • the person making an AHCD must have capacity when it is made, and must communicate those decision clearly;
  • the AHCD must be made voluntarily without coercion or undue influence; and
  • the person making the AHCD must have intended the refusal of medical assistance to apply to the specific health situations that may later arise.

The legal effect of an AHCD cannot be guaranteed, but a health professional who fails to comply with an AHCD that meets the relevant common law requirements, risks negligence, and committing common law assault or battery.

Nevertheless, assisted dying, or voluntary euthanasia, remains illegal in Australia – for now. Not an entirely satisfactory situation, but currently that’s the prevailing legal position.

Without question, there is a serious need for reform in this area of the law to clarify an individual’s right to make decisions about end of life and death related matters, including voluntary euthanasia.

Voluntary euthanasia, while supported by a majority of Australians, is still a controversial subject because it faces particularly strong religious moral objections from the churches, often raising the ‘slippery slope‘ argument in opposition, and insisting no safeguards could make the process free from abuse.

In a recent debate between Peter Singer, Australia’s most prominent philosopher and the current Ira W. DeCamp Professor of Bioethics at Princeton University, and Anthony Fisher, the Catholic Archbishop of Sydney, Peter Singer noted that:

  • while killing someone is a violation of their inalienable autonomy, in the case of voluntary euthanasia a person’s autonomy is not taken away, but supported by carrying out their wish; and
  • killing an innocent person would usually deprive them of the good things in life they would have otherwise experienced, but that’s not applicable to a person who’s suffering from a terminal illness or a degenerative disease, and dying painfully and slowly.

Singer also qualified his position by noting that he’s not an ‘absolutist’ about the autonomy point. For example, if an otherwise healthy person is ‘lovesick’ or suffers from depression, they may temporarily feel that life is not worth living, but there are good reasons to conclude that these feelings are likely to pass and, on their own, should never be sufficient justification for voluntary euthanasia.

‘Voluntary’ euthanasia by its very nature implies and requires a conscious decision, and a legally valid consent on part of the person wishing to be assisted. The requirement for a legally valid consent from the person involved automatically excludes children and any other persons who are incapable of giving the required consent, such as people suffering from dementia, unless consent has been provided prior to losing legal capacity. Further, no guardian or next of kin should ever be allowed to ‘consent’ on behalf of another person to voluntary euthanasia, as doing so would not be ‘voluntary’ and would be contrary to the principle of personal autonomy.

The debate starts at 34:20

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