Wednesday, February 7, 2018

Assisted Dying in New Zealand

Update: the submission deadline has been extended.  Submissions now close at midnight on Tuesday, March 6th.

A bill proposing to introduce assisted dying (i.e. voluntary euthanasia) is currently being considered by the Justice select committee of the New Zealand parliament.  Were this legislation to be passed into law, assisted dying would become available to anyone with a terminal condition who is expected to have less than six months to live, as well as to anyone with a grevous and irremediable medical condition.

I am against this and am in the process of writing a submission to the committee to say so.  Could I encourage you to do the same?  You can read information about the bill (along with some concerns about it) here or, if you're super-keen, read the full text of the bill here.  You can make your submission here.  Submissions close February 20th.  Parliament has prepared a guide on making submissions which you can read here.  You don't need to say anything more than whether you oppose or support the bill in question, although they prefer for you to give your reasons in moderate detail :-)

Below is my draft submission as it currently stands.  I would appreciate any comments - either on the content or on how to make any of my points clearer.  Thanks!

I oppose the intent of this bill for four reasons:
1. It will give some terminally ill people a valued choice at the expense of putting a heavy burden on other terminally ill people.
2. It will get in the way of those with irremediable conditions learning to live with their restrictions and hence deprive the community of the benefits that come from their presence and their learning.
3. It will negatively impact the self-worth of people with terminal and irremediable medical conditions, along with their worth in the eyes of society.
4. It will likely long-term lead to people with terminal and irremediable medical conditions having restricted access to communally-provided services that support their quality of life.

I expand these points below.

1.
It will give some terminally ill people a valued choice at the expense of putting a heavy burden on other terminally ill people.
It will give some terminally ill people a valued choice at the expense of putting a heavy burden on other terminally ill people.I acknowledge that some terminally ill people will appreciate having this choice available and find it a comfort, whether or not they access it.  However, I believe many other terminally ill people would find its existence burdensome.  It would inadvertently put a responsibility on them to justify their continuing existence - something which, in already hugely difficult circumstances, is simply unfair.  I do not believe that giving some people a liberating choice at the expense of giving others a crushing burden can be justified.

2.
It will get in the way of those with irremediable conditions learning to live with their restrictions and hence deprive the community of the benefits that come from their presence and their learning.
I myself am someone with a "grievous and irremediable medical condition and [...] in an advanced state of irreversible decline in capability" although I do not currently "[experience] unbearable suffering that cannot be relieved in a manner that [I] consider tolerable."  Since 2003 I have lived with a poorly understood medical condition that renders me largely bed-bound.  I require considerable assistance with activities of daily living, I live with a lot of pain and I am particularly troubled by the way my illness reduces my ability to think clearly.  Medicine can do very little to relieve the suffering caused by my condition and suicide amongst sufferers is not uncommon.

I think it would be very detrimental to offer assisted dying to people such as myself.  In the early years of my illness I frequently wished I wasn't alive.  Were assisted dying to have been an option I would have been very unlikely to accept it due to my religious beliefs, but I am certain I would have devoted a lot of my meagre energy to fantasizing about it.  It would have been a considerable distraction.  In the absence of this option I was able to commit myself fully to working out what supports and strategies I needed in order to live well.  Over the years I have had good success with this and now consider myself to have a fairly good quality of life even though my medical condition has not improved.  I am grateful the option of assisted dying was not there for me as I went through this process as I expect it would have distracted me from the important work of building a good life and learning how to contribute to my society within my restrictions.

Now that I have learnt to live reasonably well with my situation I am not only generally content with my life but I am also able to contribute to wider society, primarily through writing.  People who have learned to live well with limitations have many valuable contributions to make to their immediate community and even to society as a whole.  You can learn important things through suffering.  These contributions would be reduced or even lost if people always had before them the question of whether their life was worth continuing: that would be a constant distraction from this important work of adjustment.  And many valuable members of society would be lost to us all.

3.
It will negatively impact the self-worth of people with terminal and irremediable medical conditions, along with their worth in the eyes of society.
We live in a society that primarily values people in terms of their economic productivity.  This already devalues terminally ill people and people with irremediable medical conditions as very few of us are able to hold down even part time work.  If society then further says that it is a crime to assist most people to die but it is fine to assist people like us to die, that further confirms that people like us are of little value.  I myself have struggled throughout my illness with poor self worth: I can't do most of the things that my society considers valuable and that often makes it hard to see myself as a worthwhile member of that society.  For society, through this legislation, to so officially confirm my lowest opinion of myself would definitely make those struggles harder.

4
. It will likely long-term lead to people with terminal and irremediable medical conditions having restricted access to communally-provided services that support their quality of life.
I fear for the future of people with both terminal and irremediable medical conditions were this bill to become law.

We live in a society that puts a strong emphasis on individual responsibility and on the individual bearing the consequences of their own choices.  We also live in a society where trade-offs are constantly need to be made in order to maximise the effectiveness of the limited health dollar.

In this context, if society presents an individual with a terminal or irremediable medical condition with the option to medically end their life but they choose not to take it, where does that lead?  Surely eventually to society refusing to provide that individual with ongoing care.  After all, that person has rejected the most cost-effective solution to their problem, so what obligation does the community have to provide them with a more expensive one?

I do not want New Zealand to become a place where very vulnerable people have to choose between death and fending for themselves.  I understand that this is not what is being proposed (and that similar laws overseas have not yet led to this), but such a progression feels to me inevitable over the long term.  Assisted dying is likely to be cheaper than hospice care for the terminally ill and would certainly be cheaper than the ongoing care people such as myself require over many years: we don't currently offer more expensive treatments to people just because they prefer them over cheaper ones.


To conclude, I oppose the introduction of assisted dying in New Zealand, both for those with terminal and those with irremediable medical conditions.  I believe that, whilst it would give some terminally ill people the comfort of having options, it would do this at the cost of unfairly burdening others with an obligation to justify their desire to live out their natural life.  I believe it would interfere with the process of people with irremediable conditions learning to adjust to their situation - at best being a distraction and at worst depriving both them and their community from the good that comes such learning.  I believe it would cause the worth of people with terminal and irremediable conditions to be reduced, both in their own eyes and the eyes of society.  I believe it would, over time, lead to a considerable decline in the quality of care offered to those terminally and irremediably ill people who chose not to accept assisted dying.


Thank you for the opportunity to make a submission on this bill.  I regret that, due to my medical condition, I am not able to make an oral submission.  I urge you to make every effort to find others in similar situations who do have the capacity to speak to the bill.

3 comments:

  1. Beautifully and clearly written, Heather. Your point #3 especially resonates with me.

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  2. We done Heather. I would only add the confusion over "suicide" which in one case we want as a society to reduce youth suicide and on the other we will increase older suicides. This is a mixed message where suicide is ok but is conditional on age and condition.

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  3. Martin's submission was:

    I write to oppose this bill.

    I recognise the positive concern to avoid suffering that motivates many who support the bill. I also acknowledge that there are many individual cases where assisted dying seems kind. Even so, I believe that assisted dying is an unwise policy -- the individual good it may do will be outweighed by the resultant social disruption.

    I particularly oppose eligibility for those who have a "serious grievous and irremediable medical condition". I feel that this condition is insufficiently defined and has been subject to little scrutiny due to a focus on the terminally ill during public discussion. I also wish to register my support for the prior submission of Ms Heather Roberts, who focusses on this clause's impact on people with disabilities.

    My biggest concern, put bluntly, is that the bill serves to extend the delusion of control over the physical world maintained by our wealthier and more privileged classes. We cannot actually defeat death, but we can take it on our own terms. We need not feel pain, nor suffer the indignity of being medicated into a vegetative state, nor even the prolonged indignities of increasing infirmity.

    In response I would point out that we can medicate pain. I know there is contention about how well it can be managed, but only where retaining high function remains a goal. We can't medicate a person's sense of dignity, but we can encourage each other that our mana is not diminished as our bodies fail. Nor are our fundamental rights to dignity infringed by human weakness.

    Perhaps I am wrong, and those buffeted throughout life are also calling out for control of their final moments. I have not heard this, but the committee can test my hypothesis against the submissions they receive.

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