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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?

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Aboriginality and the ‘assisted dying’ debate..

Aboriginality and the ‘assisted dying’ debate..

I have just read a post I thought was pretty important to share. While my last post was pretty much only a ‘call to enter the debate’ about assisted dying and Māori and Pasifika attitudes, this post by Paul Russell explores some of the issues for indigenous Australians; particularly in regards to the passage of the world’s first pro-euthanasia legislation: the Rights of the Terminally Ill Act 1995 (Northern Territory). This legislation was championed by Marshall Perron, the Chief Minister (in other words, the State Premier) of the Northern Territory. The Act had a very short effective life, as it was stymied by the (Federal) Euthanasia Laws Act 1997. But the debate around the Bill raised issues at the time about the perceived vulnerability of indigenous Australians in regards to euthanasia legislation, and what appears to have been a pretty charged debate. Here is an excerpt from the post:

Perron created a few broadsides himself. In his closing speech at the second reading he said: “The campaign by the AMA and Right to Life groups at least has been dishonest and, whoever told traditional Aboriginals that we would round up the sick people and put them down ought to be ashamed of themselves.”

That last comment is incredibly poignant and historically significant. There is no telling whether Perron’s recollection is verbatim or whether he is summarizing and synthesising a number of anecdotes, but there is no doubt that issues raised by Aboriginal people and concern for Aboriginal peoples, their fears, their laws and culture, remoteness, low life expectancy etc. was a significant part of the initial debate spilling over then into the Federal debate on the Euthanasia Laws Act through 1996 and 1997 and even gaining mentions in subsequent euthanasia debates in other states many years later.

I’m not about to presuppose that Māori and Pasifika views will cohere with indigenous Northern Territorians. But this post is at least a contribution. What do Māori and Pasifika think? Should there be assisted-dying legislation in New Zealand? If so; how can Māori and Pasifika contribute to ensuring that the legislation is effective and does not perpetuate ‘the vilest discrimination’? If not: what are the culturally informed thoughts that uphold such a position?

We all need to know.

 

 

On that sad height; Māori, Pasifika and the assisted dying debate.

This is a picture of a tin. A very important tin.

NanasTin

It looks like Nana’s biscuit tin, but is actually the tin from which ‘members’ bills’ are drawn ‘from the ballot’ every second Wednesday of the month in Parliament. If we were to see inside the tin on such a Wednesday we would see roughly 80 of the numbered plastic tiles in the photo above, each one identifying one MP’s private bill waiting to see the light of day. Many of them won’t.

Private members’ bills provide for some of our most important social reforms.Louisa Wall submitted her private member’s bill on same-sex marriage in May 2012; it was drawn in August 2012, enacted into law by April 2013. Legal and social history was made.

In October last year another tile went in the tin; David Seymour’s End of Life Choice Bill. And there it waits. It is the latest in a growing line of such tiles; last year Maryan Street’s End of Life Choice Bill was withdrawn after languishing for 18 months, and a lack of enthusiasm shown by Labour leader Andrew Little in 2013, an election year. Back in 2003 NZ First MP Peter Brown’s “Death with Dignity” bill was only narrowly defeated in a conscience vote 60-58 at its first reading. In 1995 Michael Laws also had a go; only to be defeated by a much wider margin (61-29 against).

Euthanasia is not a new issue, but it seems to me that medically-assisted dying, as one kind of euthanasia, has received a lot of positive media comment and profile recently.

  • Maryan Street’s submission of a petiton to Parliament seeking law change to allow assisted dying received good coverage here, here and here. In fact, the Health Select Committee has launched a Parliamentary inquiry as a result of the petition, for which submissions closed on 31 January.
  • Lawyer Lecretia Seales sought to have the Courts interpret the Crimes Act 1961 in such a way that her own doctor would not face prosecution for helping her to die. The Courts declined the opportunity just before her death, leaving any such reform to Parliament.
  • Trade unionist and former head of the CTU Helen Kelly, in coming to terms with her own terminal illness, has also sought the right to assisted dying.
  • Cases involving people seeking to end their own lives at a time of their choosing is being reported perhaps more favourably in the media as a prime example, Peter and Patricia Shaw who killed themselves in October last year).
  • There has been some considerable debate within mainstream media outlets about euthanasia. I know this because Stuff has a tab under its ‘National’ news page called ‘Euthanasia’, so it must be true.

In my view there is considerable work has been done that is preparing the ground for David Seymour’s Bill to be ushered into law should it be drawn. Of course politics being what it is, the Bill may not succeed anyway. Nevertheless the time is ripe now for Māori and Pacific peoples to be heard in what is developing into a nation-wide debate. Except I’m not hearing them. Well, that’s not entirely true. There are a few opinion pieces here and there, but nothing like the furious debate at the time of the Royal Commission on Genetic Modification (200 submissions were received by Royal Commission from Māori, for example), and the attention (rightly) given to Māori suicide prevention generally.

What might Māori and Pacific practices around death and dying have to reveal about assisted dying? What might tikanga reveal? While religious creed might uphold the sanctity of life, how might such creeds influence or cohere with tikanga Māori perceptions of the sanctity of life? In the scraps of material I have seen Māori and Pacific peoples are divided; there is no one view about euthanasia, including assisted dying. There are few signals coming from Māori politicians; the Māori Party is non-committal although ‘open to a debate’ while Marama Fox is unconvinced assisted-dying legislation is needed. Metiri Tūrei has voiced support for the current Parliamentary Inquiry, but little more.

To be fair, there may have been a plethora of Māori and Pacific voices included in the submissions to the inquiry that closed three weeks ago. I hope so, but I feel somewhat doubtful, given the lack of chatter about the issue detectable on social media at least. We’ll see once the inquiry progresses. The late Amster Reedy was cited by the Nathanial Centre in its own submission to the current Parliamentary inquiry:

“We bring people into this world, we care for them right from the time they are conceived, born, reared, in health, sickness and in death. The rituals still exist for every part of our lives – we just need to have faith in our ancestors. Euthanasia is foreign to Māori and has no place in our society.”

Penehe Patelehio (Tokelauan, Samoan, Cook Island) was cited in the same submission:

“When someone is ill or dying, the idea of assisted-suicide or euthanasia is entirely foreign to us. There is no word in our language for this concept and consequently it does not enter into our thinking. The opportunity to care for and look after someone who is ill or dying/suffering is seen as a blessing even though it may present significant financial and other challenges. At such times the extended family and community networks come to the fore – it is common for immediate and extended family and community members to visit, provide food, and massage and converse with the person who is ill.”

 

For me personally the debate is not really about the value of life vs the value of personal autonomy to choose to die. Both things are good and neither are absolute. I recognise that the value of life, or the right to life will not always win over other considerations (the ability in law to defend oneself to the death from attack is an example where the life of the attacker is not to be preserved at all costs). In my mind that debate is actually a little sterile, but important for those who want to contribute to it. I want to ask instead: how vulnerable might elderly or sick Māori and Pacific peoples be within a regime that allows assisted dying?

One of the oft-cited great risks of any assisted dying regime is that elderly people facing the end of their lives due to illness will seek to end their lives prematurely so as not to be a ‘burden’ on their families. Others might seek assisted dying, not so much at their own behest, but at the behest of others family members. In a society where 1 in 10 older persons (and proportionally more Māori) are reported to experience some kind of abuse especially connected to vulnerability and coercion, such risks must not be ignored.

To be honest, the idea of assisted dying frightens me. I am not really frightened of the idea of humanely ending the life of someone in terrible and terminal pain, although I cannot extricate my Christianity from my position that life is worth preserving. I can understand, though, why there appears to be so much public support for such a choice to be allowed. Many of those who voice such an opinion have watched their own friends and/or family die. Who am I to gainsay their experience?

Indeed my fear stems also stems from personal experience: from our mother dying from lung cancer last year. We were fortunate enough to have been with her over those last weeks and months of her life as her physical presence declined and her mind became incapable of lucid decisionmaking. I wrote a post on this blog about our experience at the time. Her death did not frighten me; it was the realisation of the power we had over her shrinking life. We had absolute control over her money. I, and my brothers made the decisions about where she lived and where she died. Her possessions became ours in practicality well before her will made that legally possible. I had real power over my mother’s life. What frightened me was 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 (had that been available to her) 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.

To be fair to David Seymour his Bill is careful to ensure some safeguards that will minimise at some of the risk that vulnerable people might face; and makes no provision for the kinds of advance directives that would have given us the power to end Mum’s life after she lost the capacity to decide for herself. But the Bill only goes so far; the initial medical professional who receives a request for assisted dying under clause 8(2)(h) must:

do his or her best to ensure that the person expresses his or her wish free from pressure from any other person.

Forgive me, if these few words seem oddly subjective and lacking in effectiveness. The medical practitioner is not charged with ‘ensuring’ the absence of coercion (and perhaps this is simply not possible), just doing his or her ‘best’ to ensure such. Whatever ‘his or her best’ might mean. If that clause is all that stands between a coercive and abusive family and an elderly person choosing to die as a result of that coercion, I am not yet reassured. Should the Bill be drawn, surely this clause will need one heck of a lot of work.

We all know the law and lived reality are two very different creatures. Make no mistake; today there are elderly people, at least some of them Māori or Pacific; who will likely be subject to some degree of coercion, if assisted dying becomes legal in a country already distinguished by high rates of Māori suicide, and growing rates of suicide among the elderly. Surely it is time for more Māori and Pasific speakers to step onto the marae ātea for this issue. In readiness for the time a certain tile comes out of Nana’s tin.

 

[Please note this post is available at E-Tangata in a slightly edited form.]

 

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?

Āhua mōhio

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