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Euthanasia: in defence of the little moments of true life.

The parallels between birth and death are so strong to me right now. Our family has welcomed a new baby in the last few  days. At one hospital after months of anticipation and physical changes, the pains of birth began, the people began to gather, the moment of transition came eventually at a time no one could really predict. At another hospital across town, after a couple of years of preparation and physical change, the time of transition approached, the people gathered, and no-one knew when death will finally come, we waited, and we watched. At the first hospital a new little life, helpless, sentient, feeling, begins her journey. At the other hospital our Mum, just as helpless, sentient, but not always lucid, prepared, unknowingly, to end hers.

Our mother’s life drew to its end on Monday at the Bethesda Hospital in Christchurch, and I feel so fortunate to have been with her, I and my two brothers. There has been a lot of love and care expressed in word and deed between all of us involved in this process.

In those days leading up to 9.05am Monday 18 May I spent a fair bit of time ruminating about euthanasia. Mum was in favour; she was a paid up member of End of Life Choice and supported the ideas put forward in the End of Life Choice Bill promoted by Maryan Street.  Many’s the time I remember her laying down the law to me that we were to ‘pull the plug’ if she couldn’t enjoy a smoke or a drink and had lost that venerated thing ‘quality of life’.

Well. We reached that point and then some. The person that she was would have been appalled that she still lived, but only a fraction of the life that she used to live. In her final weeks she existed in that liminal space between this world and the next, bed-bound and hand-fed, phasing in, and mainly out of consciousness as Morphine and cancer took away her lucidity.  I would have looked from the outside in, once upon a time, and shuddered at the thought of ever ‘living’ like that.

But the person that she was before her death experienced tiny, intense joys that I would never have thought possible. I gave her a sip from a straw of her favourite Chateau-de-Cardboard 6 days ago when she was having an ‘awake’ period. Her eyes brightened and her eyebrows shot up and the delight on her face was transformative, just for an instant or two. An hour or so earlier she had gazed around at all of us gathered in her little room, and the pleasure she was experiencing, as we talked and laughed around and about her, was palpable, even if she could no longer follow the twists and turns of our words. “This is so good” she said, to no-one in particular. On Sunday night, as I whispered goodbye to her she smiled, said ‘See ya kiddo!’, and winked slyly at me before I kissed her cheek and stole from the room, the last words she said to me. Even then, she was still here and living a life of worth.

Our mother could never have exercised her right to choose to end her life; her cancer-related dementia and the morphine stole her ability to choose months before. And I have to admit a relief at that. There is a scene in the book Still Alice that reminds me of our own situation. Alice, a woman living with Alzheimers, a highly successful professor and professional woman, and member of a small family, decides early on in the progression of her disease that she would kill herself when the time came, once she had lost enough of her faculties that the life she had lived was gone forever. She put some pills in a little black bottle at the back of the drawer in her bedside cabinet. With it she placed an explanatory letter (her own ‘end-of-life directive’) setting out the reasons to her future self why she needs to take the pills and end everything before it’s too late.  As the Alzheimers progresses, we, the readers, know when Alice has passed that point. The thing is, she never knows it. At one point she comes across the pills and the letter, but can’t cohere her thoughts enough to understand the content of the letter or the import of the pills. To the relief of the reader (well, me at least) she eases past that point, going on to live still a life smaller and unacceptable to her former self, but one of worth and joy to her current self.

In my view, which is only a drop in the ocean of views, my mother’s end-of-life journey and the quality of her life is no more a rational reason to retain NZ’s current position on euthanasia that criminalises those who assist others to end their lives, than Lecretia Seale’s own personal story is a reason alone to change those laws. Equal and opposing stories can always be found that support one or another position. Indeed, the euthanasia debate should never, ever be about evaluating or quantifying the relative ‘worth’ or ‘value’ of any human life and the proponents of change to our laws are very careful to adhere to that stance; for example, by emphasising that this is a debate about ‘the right to choose’ to end one’s own life. After all; whose life is it? Those who seek to retain New Zealand’s current position, that assisted euthanasia remain illegal, and a criminal offence under ss 63 and 179 of the Crimes Act 1961, may seek to argue on grounds focusing on the dangers of misapplied euthanasia, and the intrinsic (and therefore immeasurable) value of every life, thereby also avoiding quantifying a ‘worthwhile’ life.

What has confirmed my own position is not so much principles and values affixed to rights and life, although my Christian faith can’t be extricated from the mix of my opinions. Rather, it has been my growing horrified realisation of how vulnerable people like my mother are. We have control over her money; no problem. I and my brothers made the decisions about where she lived, her possessions are ours to do with what we will in practical reality irrespective of legal niceties. I have learned a lot in recent months about the real power I had over my mother’s life. What frightened me is the prospect that I should have had any power whatsoever over her death. My mother would have, without hesitation, signed any end-of-life directive to absolve medical staff of responsibility, or naming me or one of my brothers the decision-maker regarding termination in the event of her mental incapacity. In our family’s case I don’t think the ending would have been any different really, given our personalities and our mix of values and morals and faiths. I could never have carried out any such document myself. I could never have sought to end my mother’s life at any point. But that’s neither here nor there, when it comes to a law changes affecting all of us.

Most cases of euthanasia will occur with the old and terminally ill. And I have no doubt that there are many terminally ill, elderly and incapacitated patients in this country who would have agreed to their own termination but perhaps under duress from their families. Or they would have agreed with no duress whatsoever but may well continue to have moments of life worth living after competence had ended, but can no longer summon the words or thoughts to defend those little moments. And I have learned that those little moments still make a life, a little life, to be sure, but a life of real value nonetheless. Ultimately, even though we try to steer the euthanasia debate away from declarations of the worth of any one person’s life, and articulate the debate as a rights issue, (a right to life, a right to control over one’s life, a right to death..) in the day to day we who have the power to decide would have to make judgments of worth. In the implementation of decriminalisation of assisted euthanasia, will not someone, often not the dying person, have to measure the worth of a life in order to decide when to end it?

Are we really that confident in our own abilities to judge the subjective worth of the lives of others?

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About Sparrowhawk/Kārearea

Legal academic and writer, Wellington. (Te Rarawa, Ngāti Pākeha. Nō te Hāhi Mihinare hoki)

9 responses »

  1. Wow, powerful and so true. Theres are a lot of situations in a journey such as your, s that you are unaware of untill you come across them, and no more staggering than what you mention ” deciding on life or death” of a whanau member. Seems soooo alian as we are developed to nurture and protect. Well that was and currently is my experience in the ocean of experiences. Thank you for your korero. Kia kaha kia toa kia manawanui

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  2. Very thought provoking words and can understand what you are saying Meredith

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  3. Hi Māmari,
    Just a few quick points.
    First, I am sorry about the passing of your mother. I am glad to hear that she (and you) were able to share many good moments before she went to meet Hine-nui-te-pō. That matters a lot.
    However, may I offer some small comments on your thoughts. First of all, it is quite possible for a person to believe strongly in end of life choice, but not actually decide to exercise that choice for themselves. In Oregon, some 40-odd percent of people who request and receive the medication that will allow them to end their lives choose not to take it. For them, it is the knowledge that they may do so if and when their situation becomes intolerable that really matters.
    Second, it is not necessarily the case that allowing end of life choice need extend to permitting individuals to issue advance directives requiring others (such as yourself) to request (or provide) aid-in-dying for them. For example, the law in Oregon does not allow for this – instead, an individual must themselves positively ask for the necessary medication (which they are only given after a process involving two doctors, counseling and a 48-hour stand-down period).
    The point being that when you ask “[i]n the implementation of decriminalisation of assisted euthanasia, will not someone, often not the dying person, have to measure the worth of a life in order to decide when to end it?”, the answer can be “no – only the dying person ought to have that right to decide.” And if this is so, then why shouldn’t she/he be able to do so?

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    • Hi Andrew. Your first point is obvious, and not debateable. The second point is fine, except Maryan Street’s Bill, that may yet fetch up before Parliament, does include provision for the end-of-life directive, and I was responding to that notion. The beauty of blogging, as I’m sure you are aware, is not to have to exhaustively canvas all options, such as those they offer in Oregon, but to respond or allude to what is most immediate. And if it is the dying person making the request that does obviate most of my concerns, and as you indicated on the Panel today, is not far away from the law as we already have it. If that was the situation I was writing about, but it wasn’t. I was writing about someone past the point of making the choice for themselves, hence my concentration on the notion of an end of life directive, which is, as I’m sure you will agree, problematic. Thank you for your good wishes.

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  4. Interesting post, Mamari.

    As you know I am pro-euthanasia. I like the distinction you make on how this is a rights issue, which is how I view it, although of course your point then becomes it may inevitably end up, regardless, a subjective value judgement on behalf of the family caring for the dying.

    You’ve read some of my own euthanasia posts, so I won’t re-litigate them here, but rather simply conjoin my views with those of Andrew Geddis above, and make one point regarding your final sentence.

    For me the question is not do I have confidence in my ability to judge the ‘worth’ of a dying loved one, but rather, in the case where a clearly expressed living will exists, do I have ability (right) to be the judge over their unhappiness, and how do I then separate my own ‘needs’ from their own. For example you say the dying, quote …

    “… may well continue to have moments of life worth living after competence had ended, but can no longer summon the words or thoughts to defend those little moments. And I have learned that those little moments still make a life, a little life, to be sure, but a life of real value nonetheless.”

    The operative words in that are the initial ‘may’, and then the notion these worthy moments are small: I wonder on balance what the totality of that life’s ending bears on this? Doesn’t the pain – because palliative care does not work for everyone – possible mental dissonance outside those ‘small moments’, the latter arising from the dying’s previously stated wishes once they’ve gone beyond their defined threshold, have to be considered also? You do wisely say that there will be many stories here that could be cherry picked to support either side of the debate, for example, and we’ve been over this, my father’s death would counter your mum’s – with the irony of my Christian father being the opposite of your mum, thinking it was his ‘duty’ to suffer for his God, (if I wanted to be glib), because the value judgement for him was in God’s hands, not his own (which is my major problem with religion – well, one of :))

    Um, perhaps there’s one more point arising from that – now that we’ve left the rights issue on which euthanasia must be debated (not value). You are honest that your Christian belief is involved in your thoughts on euthanasia – I wish all in this debate would be so honest – and I would note that further means you have quite a different conception of a life’s value over an atheist, such as myself. I’m atheist, however, other than one of my four sisters the rest of my family are ‘strongly’ religious – my family is ex Exclusive Brethren – and I have noticed there is a wide semantic divide between us all on matters relating to ‘value of a life’. I won’t try to define the distinction here, partly because I still can’t put my finger on the exact nature of it 🙂 although you touch on it in one part of your post when you say, quote, ‘In her final weeks she existed in that liminal space between this world and the next …’ There is an irreconcilable difference between you and I in your last three words there. I’ll try and explain, although I touched on it regarding Dad above.

    Again, for the religious a life’s value is determined by an outside Other, and suffering in this life qualifies for some type of after-life paradise: that’s not the case for me. There’s nothing mystical involved, there’s no after-life I’m trying to qualify for, when dead I have no sentience, I’m *gone*, so I believe I can define that point beyond which my life loses its value and I would rather, on balance, be alleviated by a death with dignity – or at least the choice of same.

    Which returns us to that only point this can be debated on: that is, what right do you have denying me my above point of view if it comes to *my* death? 🙂

    But outside all that, my sympathies re you mum, and I’m really glad the process of her death worked itself out in the manner it did.

    (Great blog.)

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    • Hi there Mark, thanks for your great response. I just wanted to touch upon one aspect of it. You say “Again, for the religious a life’s value is determined by an outside Other, and suffering in this life qualifies for some type of after-life paradise”. You made this point due to my referring to the ‘liminal space between this world and the next…etcetc.’ I have no formed view of what happens after death. Even as a theist, I don’t know if we retain self-consciousness, and not all Christians believe in a traditional ‘life after death’, believe it or not. I don’t really think about an afterlife, because I can’t conceive of it in a way that makes sense, so I don’t think I really behave or think with eschatological ends in mind. Maybe that will change as I age, I don’t know. But suffering in this life is suffering in this life, I don’t think there is a balance sheet whereby if I or anyone suffer enough in this life, we’ll get double brownie points in the next life. I’ve never really understood that kind of thinking. This life is all I have the freedom to change. Finding grace here and now. So suffering at end of life is, in my view, never “right” or necessary, although it may be unavoidable. To suggest my stance on euthanasia is predicated on belief in qualifying for ‘paradise’ by suffering is…just a little bit horrifying.

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  5. Pingback: On that sad height; Māori, Pasifika and the assisted dying debate. | Sparrowhawk/Kārearea

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