Submission to the Inquiry into aged care, end-of-life and palliative care and voluntary assisted dying

March 2019

1. Introduction

This submission deals with the voluntary assisted dying (VAD) aspect of the inquiry. Since (a) at present VAD is not part of the general legislative framework in Australia, (b) represents a fundamental change to national norms, and (c) would require a legal framework applicable to everyone and therefore overriding any cultural and/or ideological perceptions, what follows addresses the more fundamental considerations surrounding death within the intended official context.

2. Death

As part of the human condition death has formed an intrinsic element of any societal organisation, past and present. What differs are its integration with a society's religious perception as well as the context within which it occurs. Even in the absence of a religion its treatment is subject to particular interpretations largely based on some kind of belief and/or assumption, since in the end humans do not have enough information to determine what death ultimately means. Yet all those beliefs and assumptions culminate in how death is perceived and responded to; a cause-and-effect relationship regardless.

2.1. Inevitable death

In the current context inevitable death refers to the end of life caused by a sufficiently serious illness or injury as well as what is commonly called 'natural' death, that is dying of simply old age without any particular illness or injury.

The former is usually accompanied by considerable suffering, a result of the body's compromised disposition due to essentially external factors. This does not apply to the latter, at least not in any prolonged form.

In the past any treatment, now under the auspices of palliative care made possible through modern science and technology, had not been available in developed nations and is still largely absent in under-developed countries. Thus the suffering had been and/or is as much part of the human condition as is death itself.

On the other hand, the availability of palliative care has changed the perceptions and expectations, leaving the traditional surrender somewhat behind. Since modern medicine is able to positively address many if not most illnesses and injuries during one's life, the notion has formed that the end of one's life should be no different.

Unfortunately, reality does not always agree. If it did, arguments leading to, in this case, the current inquiry, would not be necessary.

One could see the desire to circumvent palliative care as a form of self-entitlement, as a perceived right to avoid the traditional suffering because palliative care cannot provide the relief experienced so far after all.

Yet it is also true that modern medicine has allowed humans to live considerably longer than in the past. For example, dying from cancer stretches across a much longer time span than in previous generations (although many cancers no longer mean a death sentence to begin with). Hence any suffering is equally more considerable than before and needs to be seen within the context of a person's overall situation.

If medical treatment applied during one's life is accepted as reasonable, indeed as a right, due to its capacity for relief, then, not being able to provide that facility should not diminish a person's right for relief. It is not the person's fault if medicine is found wanting in a particular case.

2.2. Purposeful death

The term purposeful death refers to an end of life brought about by some action undertaken by the individual where the individual has a reasonable expectation that the action could or would lead to his or her death. Examples are participating in a war, coming to assistance in dangerous situations, and the like.

While it should not be automatically assumed that the action is undertaken with the express wish to die, there are circumstances where the sheer inevitability of death virtually make it so. To discuss the specific formats of such cases, especially within one or the other culture, goes beyond the scope of this submission. Nevertheless, such actions are generally admired precisely because the action's outcome becomes juxtaposed to the inalienable will to live. If life is treasured, then to give it up for a 'higher cause' attracts the term 'hero'.

Whether an individual's decision taken can truly and ultimately be described as voluntary goes beyond the current scope. For example, there hardly has been any war that had commenced ad hoc, that is without any officially designed initiative to psychologically prepare the population for such an event. And the nobility of coming to someone's aid under profound danger has always been part of a people's psyche anyway without any preparations necessary. In contrast, to start a war-like action outside that sanctioned space invites considerable opprobrium; the present term for such a person would be 'terrorist'.

Note that in the case of war jeopardising one's life is deemed acceptable even if the direct consequence is someone else (the 'other side') losing their life. When in the course of coming to someone's aid another life happens to be lost the status of the helper hardly suffers either. Context matters.

3. Voluntary assisted dying

The debate accompanying voluntary assisted dying is, and should be, anchored on three fundamental points: (1) the person suffers (physically, psychologically, emotionally, through loss of dignity), (2) medicine, in its current form, cannot offer the relief sought, and (3) the decision to end one's life is taken by the person in question and no other and must be identifiable as such. Hence remarks such as VAD making 'society kill its members' are ill-conceived.

The considerations applied to those three points refer first and foremost to the individual involved. This may seem rather obvious, but sometimes the views held by persons who themselves are not facing death can vary considerably from those who are, without the former not necessarily comprehending the discrepancy (yet). Not unlike ex-politicians who no longer have to worry about party ideology and petty squabbles, when the end of life approaches one's mindset changes. What was hitherto considered important, definitive, or unimaginable, can have shed its fervour and recedes into the general mix of life's features. Perhaps the brain's chemistry ameliorates the accents, perhaps it is simply mother nature spreading a veil over the peaks and troughs. Whatever the reason, people in the fullness of life are hardly qualified to judge the departing.

Linking the aforesaid to the remarks under 2.1, any aspect regarding the desire for relief does not belong in the same context of trying to escape an arduous situation. For example, a soldier who chooses self-mutilation to avoid his duty is regarded with disgust, the more so should he have removed himself altogether by committing suicide. Being at death's door is fundamentally different - there are no further duties to fulfil. The same can be said, albeit on a lesser scale, about more everyday challenges.

As to the comments under 2.2, the end of one's life also places the meaning of 'purpose' in a different category. Now the word no longer refers to others, but to oneself. No longer is the situation ongoing for all concerned, the person has come to the end of society's obligations. The idea therefore that he or she should be held accountable for what VAD means to anyone else, especially when such third-party judgments are based on a lack of insight, is neither morally defensible nor is it rational. If that person entertains these thoughts at all, the decision whether VAD provides relief and for what ultimate reason is his or hers to make and nobody else's.

An exception to the last point would be an individual's diminished capacity to make those decisions. For that reason the three conditions mentioned at the beginning of this section are termed 'fundamental', particularly concerning item (3). The finality of death would require to err on the side of caution.

4. Conclusion

Although voluntary assisted dying is nothing new per se, the present social and medical circumstances surrounding death have shifted the issue into a new light. The more traditional considerations in terms of courage, obligations and duty, as well as a person's perceived disposition within society in general, still influence the debate.

An additional factor comes from the rise of complexity in our lives. For better or for worse, it has led to an ever increasing number of individuals and groups, often with only a tangential connection to the matter at hand, to offer their opinions, give advice, or set down rules in order to determine another's fate.

The erstwhile aspects are not invalid, but the facilities available today, and in some cases the lack thereof, render them in a modified form, including the very concept of human rights. To deny voluntary assisted dying makes no sense personally, medically, and morally.

Above all, one of the most profound decisions a human being can ever make must be approached with respect.

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