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

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?

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?

In the Waiting Place.

Are there any such things as ghosts of those who still cling to life, I wonder? I feel my mother here in her house, the house where I grew up. I hear her, beyond the range of my real hearing, moving about the house, softly. Carrying her hot water bottle up to bed. Moving softly outside to feed the birds, the creak upstairs must be her on her way to the loo, probably clutching the ever-present transistor radio. I hear the oven door closing. I can smell her too, or at least, the tobacco smoke, that ever-present blue haze, accompanied by the hacking cough. I can sense her sitting at the dining room table ruminating over the crosswords, adding items to the shopping list, keeping up with the diary. Cackling quietly to herself over some absurdity in the paper. I hear the shuffle of the spindly wooden chair as she stands on tiptoe to peer over the top of the fence onto Papanui Road for the latest local outrage to get her juices flowing. She always watches The Road. The missing recycling bins; the occasional vandalised letterboxes; and the sniffy reproachfulness of Her Next Door, who (apparently) everybody round here loathes. The Road is a living stream of cars, people, dogs, bikes, news, and the rumbling buses belching their payload of gritty exhaust fumes, mimicking little earthquakes that nobody needs. And then there is her little green oasis nestled between the house and the fence. The place where the birds come to feed and talk. The broken birdbath, the dishes with honey water and the containers with breadscraps. I can hear her “took-took”ing to the birds. Not those bloody starlings though. No truck with those bloody bullies. Wax-eyes, sparrows, fantails…and before the earthquakes, the hedgehogs. We wonder where he little hedgehog family went to, four years ago. She misses them.

I am sitting here at 2am in the morning and I am waiting for the bang of the poker on the floor upstairs to let me know it’s time to Turn That Bloody TV Off. I’m waiting for the turn of the handle of the door into the hallway and for her to drift into the room on her way to put the kettle on. She’s going to be pretty mad. Never the tidiest of people, I have let the lounge in which I am camping turn into, well, a freedom camper’s paradise. Minus the poo, at least.

So I can hear all these things and see them all too, if I close my eyes and block out the Emmerdale marathon on TV. But she isn’t here, and she never will be again. At least, I don’t think so. Not until she lies here and we gather for her.

My mother is sleeping fitfully, no doubt, a few streets over, at the Home Hospital. Her mind and body wander now, and she is waiting for the close of this chapter. I’ll go back tomorrow to sit with her. I’ll marvel anew at the kind of ethereal beauty that has come upon her recently as she slips just a little further away from us. She slips in and out of this world and then she’ll blindside me with her wit and knowingness. And then she’s off again into a world we can’t really enter. Her knees are enormous. That’s what happens when the flesh disappears from every other part of her body. Joints become bulbous.

Smoking, the one thing that gave her The Passenger, as she calls her tumour, the one thing that put her in hospital last month and into 24 hour end-of-life care this month, is also the thing that gives her days rhythm, her movements purpose. The crosswords and diary sit unfilled, except by us, her children, as we try to fill in the gaps, perhaps to hold out to the world that there is still continuity with that old life. Twice a day comes the pilgrimage, the slow wander with the walker, or lately, the wheelchair, to the scruffy green patch, with the tables and plastic chairs, where she lights her cigarette, breathes deeply, and sighs in contentment. The smoke floats around her like a deadly nimbus; but the irony still pinches. That one thing that puts her here, is the one thing that gives her any remnant of her owned life now. She picked up her first cigarette at the age of 15 in Eastbourne, about the time she left school and her parents divorced, around 1951. She thinks she pinched one of her dad’s. Well, they all smoked. And now, she revels in the camaraderie of the shunned. She smokes out here with the staff and with a couple of the residents. She’ll smoke alone if you let her, and the cigarette perches weakly between her fingers with the ash always threatening to drop onto her lap. The smoke wreathes me too, and I breathe it in.

The other day one of the new nurses joined us; a lovely young lady in her twenties. As my brother said later, she knows, surely, that my mother may be her future. If so, she gives no sign, just her kind smile.

So much kindness at that place. When she had a terrible pain break through the slow-release morphine fug yesterday, our mother wept, and her eyes were wide with fear. I pressed the call-button willing my own tears to stay inside, and within seconds the nurses were there, bustling, stroking, soothing, administering, watching. “Don’t scare me like that!’ said one, not because the situation was beyond her ken, but because she just didn’t want my mum to be in that terrible pain. Neither do we.

Well. Perhaps time to try and sleep again, before the tears burst out again and the sounds of my mother’s not-yet ghost once again inhabit these quiet hours.

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