Aug 23, 2016

Three takes on the issue of choice in death and dying

There was a time, not so long ago, when death was a taboo subject. Currently, however, the nature of our dying is increasingly being aired publicly from various perspectives as an issue of absorbing interest.

Personally, there are those who are starting to choose to confront their fear of death rather than resorting to denial and avoidance as ways of dealing with it. Politically, the debate on assisted dying is getting increasingly heated without getting anywhere to date. And socially, as pointed out in a recent ACRC blog, there is growing criticism of the fact that for the majority of people who are hospitalised with the final stages of a terminal illness, the desire to be allowed to return home to die is largely ignored.

The common thread through these three arenas is the issue of choice, and how to be able to exercise that. And recent approaches to them have come, respectively, from a book, a magazine article, and a movie.

Dr Leah Kaminsky had such a profound fear of death that – finally – she decided to confront it by writing a book about it. As she put it in a 2016 article in the Weekend Australian Magazine, “Ever since I can remember I have harboured a profound fear of death… I am scared of becoming ill, of dying….So how on Earth did I choose a career in medicine, where I am constantly surrounded by people facing the threat of death?

Facing what makes us afraid will make us less afraid

“Several years ago I decided to journey into the belly of the beast and explore this fear of death that I carry. I hoped that writing about it would help me find some inner peace.” In that way, it could be said that instead of simply allowing herself to remain in the thrall of that fear, she chose to deal with it head on, and hopefully to overcome it, on the basis of the argument that “facing what makes us so afraid will make us less afraid.” That she succeeded in that objective is suggested by the title she then gave to this book: We’re All Going to Die: A Joyful Book about Death. And the very positive review of it in The Sydney Morning Herald’s Spectrum also quotes her conclusion, which – Kaminsky pointed out – is in accord with the idea of psychotherapist Irvin Yalom, that “the more you fail to experience your life fully, the more you will fear death.”

But it’s one thing to be able to loose or lessen one’s fear of the idea of death and dying, and it’s quite another to contemplate forms of dying which are so unpleasant that one might want to – so to speak – bring it on, earlier and with help if needed. This is the issue that Andrew Denton has explored in detail, and he is now publicising his findings in various forms of the media, from print to a 17-episode podcast, about the right to die with dignity. As he told a Sydney Morning Herald journalist, “I wanted to inform the debate and I wanted to inflame the debate. I want politicians and doctors to stop sitting on their hands while Australians needlessly suffer.”

His interest in the topic, he said, “was sparked by the awful experience of watching his father, author and broadcaster Kit Denton, die slowly and painfully in 1997.” A more recent article in The Australian Women’s Weekly (AWW) noted that he had become “a passionate advocate for introducing assisted dying legislation in Australia” after being fuelled both by the traumatic memories of his father’s death and by an account he read about the very different options available to people in a similar position in the Netherlands.

Consequently, and largely at his own expense, he then spent eight months and “hundreds of hours talking with nurses, doctors, politicians, lawyers, priests and surgeons here and around the world, trying to work out how assisted dying laws work and if they could bring relief to Australian families. The answer was an unequivocal yes.” And the interviews and rationale for his conclusions are in his podcast called Better Off Dead, which can be accessed on .

Is it your choice? ‘Voluntary Assisted Dying’

Critical points that he wanted to emphasise in what is called “voluntary assisted dying” are that not only is the choice and action then entirely up to the individual person who has opted for this, but also that – where it is permitted – “almost 40 per cent of people who get this medication choose not to take it.” And for himself, when asked whether he would opt for assisted dying himself, his reply in the AWW was that “If I was in that extreme position, it is something I would like to have the option of doing it for myself. I can’t say whether I’d do it. One of the things I’ve realised is that people cling to life well beyond what you would, from the outside, think anybody could do. It’s such a personal thing and until you’re there you don’t know what’s going to happen.”

And it is this exercising of personal choice by someone who is “there” with a terminal illness and how he then decides to live out his dying days, that is the theme of a Spanish film, Truman, which is currently playing in Australian cinemas. This is, essentially, a two-hander, about two longtime friends – Julian and Tomas – who come together as Julian faces the last stages of his illness. As summed up in a review in Variety magazine, Julian is operating under the mantra that “Each person dies as best he can.” And his decision about how he wants to do it comes after unsuccessful bouts of treatment and the option of more treatment that can only be palliative and result in an indeterminately longer period of life of probably poor quality and ending in a hospital death. In the face of this scenario, his choice is to forgo additional treatment that “his doctor admits will only delay the inevitable,” and to die on his own terms, possibly involving a cachet of pills if things get too unbearable.

While, as a caring friend, Tomas’s initial aim is to talk him into resuming the treatments, he realises “early on…..that he’s unable to change his friend’s mind once it is firmly set. And so the two men spend what each of them knows with be a kind of last holiday together” as well as tackling Julian’s attempts “to tie up loose strings before he makes his exit.” A high priority as part of that, for him, is to find the right home for his beloved dog Truman.

The film explores with sensitivity not only Julian’s progress towards some sort of peace of mind through his decision, but also the ramifications of that on people who are close to him, including not just Tomas, but also Julian’s cousin, who is angry and frustrated that he won’t fight on and give them more time together. As they show, the feelings of people who care are a complicating factor and can result in an emotional tug of war in the heart as part of the dying process.

While death can come at any age, for those of us who are ageing beyond the tipping point it starts to become an ever-nearing inevitability. Consequently, some of us become increasingly challenged by how we feel about that, and how that – in turn – might colour our preferences as we move towards that end through the process of dying.

When the time is right, open up conversation

For each of us, as Denton pointed out, that is “a personal thing”. And, at different times, it might also change and evolve, depending on circumstances, rather than just being a static thing. What is important as we progress through our stages of thinking about it, is to clarify what we want not only in our own minds but also – through having the possibly tough conversations, and in appropriate documentation – in the minds of those nearest and dearest to us.

All of that can only benefit from the ways in which aspects of choice over what matters in death and dying are becoming more acceptably explored in the public domain rather than being continually swept under the carpet of denial.

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