A post I wrote two years ago, that I am reposting in the wake of the End-of-Life-Choice Bill being drawn from the private members’ ballot.
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?
I remember enjoying this post when you originally wrote it, Mamari; albeit, of course, I don’t agree with your conclusions.
I believe there is a more fundamental issue here. I want the right of euthanasia; having that right in no way affects those who don’t want that choice, however, the against camp are seeking to deny me that right. What right do they have to bully my choices like that on such an important issue when I in no way would ever seek to enforce my views on them? Everything else is a side issue.
What’s really annoying me already since the ballot yesterday, is we have government ministers, Finlayson, already scare-mongering about euthanising the mentally ill, etc, when David’s bill specifically only applies to those with a terminal illness within 12 months of death. That’s dishonest and despicable behaviour from a government minister, as was, earlier, seminary trained Simon O’Connor’s outright sabotage of the select committee set up after Seales’ death: I resent this issue is going to be decided by a very powerful band of Catholics in power: there’s supposed to be a separation of state and church, but under a conscience vote that won’t apply here, and the majority will of Kiwis will likely be unrepresented.
And a last point. I have also already seen the ‘idiot’ line that we shouldn’t be allowing the state to decide the circumstances of death. Again, dishonest. It’s the opposite of that. Individuals are being given the right of choice in death, and the state agrees to stand aside (that is, will not take a criminal prosecution). It’s a right that correctly takes the state out of our private lives, where it has no right to be.
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Great to hear from you, Mark! Hope you and your family are well.
Just a couple of thoughts in response. In legal terms, those who are pro euthanasia talk of a right to death as if it’s an absolute, and a right to death doesn’t exist in a human rights context, let alone an absolute right to death. How can there be, if the right to life is not absolute? (which it is not). There are consequences of creating a right to death by legislation, for example a legislative right to death, if sanctioned by the state, doesn’t just mean freedom to kill yourself, it imposes a duty on the state to provides the means to do so. And where do you draw the line? The current government would create a set of circumstances and safeguards as to where that line is drawn and at what point the state has that burden. What’s to stop the next government lowering those thresholds, and the next government after that? I don’t trust governments enough, I’m sure you understand that.
And, yes, I do buy the vulnerability argument. I paid it no attention until I realised how powerful I was at the end of my mother’s life. It was so easy to take her money; it would have been a snip just to turn the conversation around to euthanasia and to press her in the direction she had so often told me she wanted to go when she was strong, and there would have been nothing to protect her from me, no-one to support her is she changed her mind. If I was a different kind of person. It’s absolutely naiive to think this would not happen, and I utterly reject this is a fear-mongering argument for my part, I SAW how much control I had, how ABSOLUTELY vulnerable she was, even before she lost competence. it is a short jump from a person acting out of their own free will to end their life (which, actually, I do understand) to me being an operative cause of that decision. That’s just not right. And there no stats anyone could pull out to gainsay this cos stats are not good at discerning the corners of the human heart.
I understand your latter point of view, but don’t agree, and am unaware of it being an issue in overseas jurisdictions. There must be a living will in which your express a desire to control this end of life, and per my memory, you must be compos mentis when making this decision (and you must convince two doctors). I don’t think a legal euthanasia could be performed under this bill in the circumstances you site re your mum (also, how is that different to now as when a loved one at the end of their life falls into coma, whatever, and medical staff you a ‘series of important questions re ongoing care’ – thinking of my dad when he died in a hospice.
I still hold that legalisation mainly gets the state out of the way in that is stops threat of prosecution: okay is might provide the framework and audit for the ‘mechanism’ but all humans in that system have agency.
So we remain unreconciled on this. Thus my fall back: I don’t want to influence any of your end of life decisions; but by not allowing me the choice, you force my options according to your beliefs (which I don’t hold). It’s as simply as that for me.
With that, 4.50pm Friday. I have a weekly standing order with the blokes at the end of the road in the, ahem, ‘gym’, for a couple of beers before coming home cooking Mrs H a curry.
All the best. I don’t comment much, but always read your posts.
… oh, re your first paragraph above: thank God I’m not a lawyer 😉
Gotta go. No time to proof, sorry.
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Should also say about your ‘fall back position’: well, that is true of any area in which I favour a law but where you favour no law (accepting that your preferred position would always be an unregulated right..although ironically here you favour a law that strips existing protection from my future vulnerable self because of your..er..belief). Like me voting for a party that favours more tax frinstance. And that is a pretty self validating position..but consistent I guess…anyhoo…all best..
… the typos there are a horror story! Gotta go.
Don’t read above. I’ll rewrite tomorrow. It’s illegible.
hahaha! No worries! Hope the “gym” was suitably tiring 😉
Hmm, an interesting point, having watched my parents die I get where you are coming from.
So yes, let’s move with care on this.
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Interesting and well-written post, Sparrowhawk, but I’m not sure you can be the judge of whether someone else is living a life of worth because they smile or say “See ya kiddo.” And when you say: “I have learned that those little moments still make a life, a little life, to be sure, but a life of real value nonetheless”, who is it of value to? Is it valuable to you or your mother? If assisted dying becomes legal, we’ll see more clearly whether someone dying values those little moments more highly than drifting off into death with the aid of a potion they administer themselves. If I am in pain when I am dying, my choice will be firmly to put myself out of my misery. Possibly as many as 900 patients die each year in uncontrollable, excruciating pain in New Zealand from cancer alone. I know about this from the death of my sister from cancer, strapped to a bed and screaming so loudly she could be heard from a distance away down hospital corridors. There were no “little moments” for her in her agony.
I am very sorry to hear of your sister’s pain and I understand your support for this kind of legislation. I guess your questioning my perceptions (but not your own) further shows the pointlessness of using our own personal stories as the basis upon which to craft law reform. The more important question might not be about our families’ experiences at all, but why I think you should not have an absolute state-sponsored right to die on your own terms, and why you think you have such a right and why that right should trump my own right to have my life protected when and if I ever become terminally ill and vulnerable and more susceptible to the coercive strength of others. In other words…what do we do about the vulnerable? What do we do about the severely disabled, advocates for whom are very clear that in many cases disabled lives are deemed simply less valuable and less worthy of preservation, but who may well be more likely to face pressure to expedite their own deaths? Don’t forget, the Bill as it stands is not just for those with a terminal illness expected to die within 6 months, but for those with “a grievous and irremediable medical condition” that need not be terminal at all. How do you think legislation can be designed that can protect the vulnerable enough to ensure a free and unfettered choice?