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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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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?

A Good Death

A Good Death

 

We all knew, as our mother got older that she wanted the “plug” pulled when the time came. In her view of the world, if she couldn’t have a drink or a smoke under her own steam, as her saying went, it was time to go. Hers was a position of utter belief in the worth of independence and autonomy. Anything other than an independent life was not worth living. At the age of 78, robbed of her precious independence by lung cancer and dementia, she smoked her last cigarette in the smokers’ yard at the Bethesda Rest Home & Hospital and left us a couple of days later, in 2015. As I cleaned out years of yellowed correspondence from her house a few days after her death, there were dozens of newsletters from the End of Life Choice Society. I felt sad for my Mum at the frustration of her beloved choice. I don’t think she ever knew how utterly dependent she became, in the end. But then again, as I have written elsewhere, her tiny life at the end still had beauty in it.

There is much to admire in my mother’s stance on end-of-life choice, one shared with at least some of her friends. They wanted, and still want, the power and the right to determine their lives’ ends. The scenario to haunt their dreams and to avoid at all costs, is one of being tethered to machines, with life’s pleasures stolen away, and intolerable pain, all signalling the worst thing of all: utter dependence. The dependent life, on this view, is no life at all. There is a great value placed on the idea of freedom of choice. Its antithesis, the absence of choice, is something to be feared and avoided. On this thinking a chosen death is a noble and compassionate death. An unchosen lingering death is ignoble and cruel.

Of course, there is much more to that debate.

There are all kinds of factors that play into the debate on assisted dying in New Zealand at present, lately manifested in response to David Seymour’s private member’s Bill still awaiting its second reading as at the time of writing. Often, the entry into the debate is by way of stories. The story of Lecretia Seales, and her fight in the courts to enable her doctor to assist her to die was compelling. There is no shortage of compelling stories that provoke our pity and fear for those caught up in those narratives, like Peter and Patricia Shaw, an Australian couple who killed themselves in October 2015, or the terminally ill 9 and 11 year old Belgian children who have been the youngest to be euthanised in that country in 2018. But a law on euthanasia needs more than the most compelling narrative.

I sometimes get asked what the “Māori perspective” is on assisted dying. I can’t pretend any expertise on this or to speak for Māori communities. There are many perspectives, although only rarely expressed in the public domain. However, some of those whakaaro have been reported by the Justice select committee on the End of Life Choice Bill. So I’ll let the Committee report back:

Although not all submitters who identified as Māori oppose the bill or consider it inconsistent with Māori tikanga (values), others have several concerns. Submitters described a Māori worldview where people are part of their whānau, hapū, and iwi, where care, respect, and reverence are shown for the elderly and terminally ill, and life and wairua (spirituality) are valued. Some believe that assisted dying would breach the tapu (sacredness) of the person and have spiritual consequences for those involved. Some submitters consider that the bill would breach the Treaty of Waitangi. In particular, they cited the Treaty’s underlying principle of tiaki (protection) of Māori values and, under Article 2, the concept of the taonga (treasure) of life. Other submitters consider that the bill would contravene holistic models of Māori health, such as Te Whare Tapa Whā, which sets out four equally balanced foundations of Māori health: physical, spiritual, family, and mental.

It is possible to imagine an assisted death taking place in the context of a warm and loving whānau environment. The range of viewpoints suggest that Māori are not of one collective mind in regards to how tikanga Māori may or may not fit with the idea of assisted dying. However, there are pragmatic concerns of more urgency. Many of the submitters on the Bill were just as concerned that racial inequities already existing in the New Zealand health system will be magnified with the introduction of assisted dying:

Some submitters believe that assisted dying would further contribute to discrimination and prejudice that already exists in the health system. They consider that Māori and Pasifika are less likely to be able to pay for health care, and that they receive lower standards of care and have less access to palliative care. Therefore, they believe these groups will be disproportionately more likely to request assisted dying than other groups. Submitters also believe that these groups are less likely to be treated by health practitioners of their own culture or those who understand their world view. They regard it as important that health practitioners understand the correct procedures for tāngata māuiui (sick people), their transition to death, and the treatment of tūpāpaku (the deceased).

The position described above is supported by  research by the Kia Ngāwari study (2010–2012) funded by the Health Research Council of New Zealand, a study of 27 whānau Māori that reveals how important collective processes often are for whānau Māori at end-of-life and how Māori are less likely to be able access sufficient palliative care. Rangatiratanga is vitally important for dying Māori too, but being able to exercise rangatiratanga fully means that whānau must be resourced properly:

…the economic and material ramifications of colonialism impact on Māori hugely at the end of life, directly influencing the ability of whānau to identify and access much needed resources and palliative care support. Generally, only whānau who had a family member with a tertiary qualification or employment within a health or related field were well placed to identify and access much needed statutory support, palliative care and resources. Knowledge of the health system, or previous use of specialist palliative care services, increased the likelihood of some whānau accessing palliative care support and resources. When combined, these things strengthened whānau to provide the best care, frequently under difficult circumstances.

One of the greatest questions about the prospect of assisted dying being enacted in New Zealand law arises because the proposed legislation establishes a process that presumes an individual can make a true choice to die. Many of the submitters opposed to Seymour’s Bill cite the problem of the vulnerable person being pressured or coerced to die by others. Dr John Kleinsman identified 5 types of vulnerability as an expert witness to the High Court in Lecretia Seales’ case.

communication vulnerability, represented by persons who are impaired in their ability to communicate because of distressing symptoms;

institutional vulnerability, which refers to persons who exist under the authority of others;

differential vulnerability, which includes persons who are subject to the informal authority or independent interests of others;

medical vulnerability, which refers to those with distressing medical conditions; and:

social vulnerability, which includes persons who are considered to belong to an undervalued social group.

While Lecretia Seales absolutely denied that she was in any way vulnerable as described in any of these categories, whānau Māori with dying members are likely to fulfil some or all of these vulnerability categories. As pointed out by Dr Hūhana Hickey Māori are also more likely to be experiencing disability, and thus more likely to be considered vulnerable in that context as well. As noted by the Disability Commissioner, the priority should be that disabled people should be enabled to exercise the choice to live:

Before the country legislated choice in death, it needed to work towards ensuring, to the greatest extent possible, all people had the same freedom of choice in life.

In any event, what would be the nature of the choice to die for any person in any of these categories?

Often to be found at the very heart of our general Western legal system is the notion of the freely choosing individual, the individual rights-bearer. The person who, when faced with a choice of courses of action, is capable of choosing one of those courses of action. Such individuals must have free will in order to exercise a real choice; an idea that is powerful and optimistic. Thousands of years of philosophical and religious thought have also upheld this idea, particularly in the West, that humans can, for example, choose obedience to a deity or a principle, or a moral.  Why not assisted dying?

At the heart of much opposition to the End of Life Choice Bill is a denial that all choice exercised under such legislation will truly be free. Those who oppose the legislation on a vulnerability basis will identify that there is no level of security that the Bill can offer that will reassure them that the choice to die in every single case will be freely made. Those who cannot truly and freely choose should be protected by the state, not exposed to greater risk of death. An open letter signed by more than 170 lawyers put it this way:

We believe that the mark of our civilised society is measured by the manner in which we treat and protect our weakest and most vulnerable members. While the Bill purports to be targeted to a “small but significant group of competent adults who are not vulnerable and who wish to die without unbearable suffering and pain”, we consider that it will in fact place many vulnerable members of our community (whether terminally or chronically ill, disabled or mentally ill) at greater risk of premature death by homicide or suicide as a result of neglect, coercion and other forms of abuse, as well as misdiagnosis or prognostic error and uncertainty.

I would count myself in that camp. Well, I should do. I signed the open letter. At present, all that stands between a vulnerable  person making a decision to die and the enactment of such a decision in the Bill, are a set of criteria. A qualifying person must be one who, on the current form of the Bill:

(4) […]

(c) suffers from—

(i) a terminal illness that is likely to end the person’s life within 6 months; or

(ii) a grievous and irremediable medical condition; and

(d) is in an advanced state of irreversible decline in capability; and

(e) experiences unbearable suffering that cannot be relieved in a manner that the person considers tolerable; and(f) has the ability to understand—

(i) the nature of assisted dying; and

(ii) the consequences for them of assisted dying.

At present, to ensure coercion does not exist, the certifying medical practitioner must:

8 […]

(h) do their best to ensure that the person expresses their wish free from pressure from any other person by—

(i) conferring with other health practitioners who are in regular contact with the      person; and

(ii) conferring with members of the person’s family approved by the person; [..]

David Seymour, responding to submitters’ concerns, has proposed significant changes, including deleting the option under s4(c)(ii). In that case, only those facing a terminal condition would be eligible for assisted dying. He has also proposed strengthening the protection against coercion so that a certifying medical practitioner must be “satisfied” that no coercion exists.

I suspect though that even with these changes, little will change between the entrenched positions of this debate. Few on this side of the maunga are ever likely to accept that any caution or protection that may be inserted in the legislation can ever bring about true protection of the vulnerable, whoever we conceive the vulnerable to be. For many, I suspect the opposition lies more deeply than that and depends on a particular vision of humanity. We tend, I think, to divide into those two great camps; those for whom the idea of the autonomous individual is supreme, and those for whom human interconnectedness is the greater vision. The dividing line between these positions can be porous, it’s true, but the camps exist, and don’t neatly align with political concepts of left and right.

An additional and often unspoken factor in the public discourse is that many like me who have a religious faith have an understanding that we are dependent on what we conceive of as the Divine, as well as on each other, for our existence. This understanding of dependent existence will always make an assisted dying regime difficult (but not impossible) to accept. For others, such a position can be utterly offensive and even a denigration of autonomous individual personhood.

My mother and I resided in those two different camps and respected each other’s position. Perhaps the more salient point is that my brothers and I, because of excellent palliative care, were able to come together, in love, to accompany our mother to the veil, but not beyond, at the close of her day. Equitable and free access to excellent palliative care and a good death, as far as it is possible, should be upheld by law and policy for each one of us. The truly terrible thing is that it is not. assisted dying legislation represents an absence of hope that it ever will be.

[Please note, this column was first published on E-Tangata]

Photo Credit: Gina Smith.

Beyond the Bubble ep 2/2!

Beyond the Bubble ep 2/2!

Yay, part two of the first ep of our web series is up. Things get a teeny bit testy as Dion, Wendi & Maryan consider if we really can be certain that laws enabling euthanasia will have no effect on people who are vulnerable or even suicidal. How do we balance hope of a good life with the right to die, particularly for younger people? Watch & share whānau…

Beyond the Bubble: conversations across the divide. Ep 1/2!

Beyond the Bubble: conversations across the divide. Ep 1/2!

Something a bit different on this blog, episode 1 of a new web series I have been involved in. The topic of this first ep is euthanasia and assisted dying. Various people get exercised about the issue, but civilly so, including Wendi Wicks, Dion Howard and Maryan Street. Big issue, lots to say, we only get to some of it here, but better than a kick in the head as my Mum would say. My oath! Please watch here and share!

Kia ora!

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.]

 

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