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New Zealanders get to have their say in the End of Life Choice referendum on October 
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New Zealanders get to have their say in the End of Life Choice referendum on October 17.PHOTO: GETTY IMAGES
We asked Otago Daily Times readers for your feedback at the start of our series on the End Of Life Choice referendum, and how you delivered.

We have received thousands of words worth of well-constructed and heartfelt opinions from both sides of the debate, and we thank you very much for taking the time to write them.

The final pieces in the series run today, but over the coming weeks we will run a range of your feedback, both as opinion pieces and as letters to the editor.

The referendum date, along with the general election, has now been pushed back to October 17, giving more time for consideration of this important question.

Of the many articles we have run over the past week, the one which has attracted the most feedback has been the one on the Otago Community Hospice and its stance opposing euthanasia.

Some responses were intense, and overlooked the fact that the hospice would continue to provide palliative and end of life care for those people with terminal illness, regardless of a desire for assisted dying.

However, the hospice operates under a fundamental principle that palliative care is to neither hasten nor postpone the natural progression of death, for which reason it is opposed to euthanasia.

While the hospice helps many people and their families in their final days, others would choose to die in other ways, and have expressed their views passionately on that point.

For many it came down to the human right to choose one’s destiny, and for them that should be their choice alone and not be dictated to them by clinicians or legislation.

Whatever side of the debate one falls on, the choice for all comes on October 17.

While there was some heat in the discussion in the ODT’s letters and social media platforms, there was mostly light, and we thank you for the civilised debate you have had.

mike.houlahan@odt.co.nz

 

In the final part in our series on the End of Life Choice referendum, we asked two prominent voices - one on each side of the debate - to outline their respective stances.

University of Otago law lecturer Prof Colin Gavaghan will be voting "Yes".

University of Otago Bioethics Centre senior lecturer Dr Janine Winters, who is also a practising palliative care specialist, will be voting "No".

 

Dr Janine Winters. PHOTO: SUPPLIED
Dr Janine Winters. PHOTO: SUPPLIED

NO - JANINE WINTERS

The most important thing I have learnt in four years of intensely studying the euthanasia/assisted dying (EAD) debate is that it is almost infinitely complicated.

The more I learn, the more difficult it is to untangle.

I have three stakes in this debate: I am a mid-career palliative medicine doctor, I am a medical ethicist and I am a healthcare consumer with my own values and fears.

Personally, I have had multiple close family members who died slow deaths from dementia.

I have fears about loss of personhood, being out of control and suffering in the months and years before my death.

I have long expressed these fears by asking family members to "put me out of my misery" if I became unable to recognise them.

This side of me craves feeling in control. This side hopes that if "things got too bad" that someone I trust would end my life for me.

EAD for dementia is not part of the current discussion: the End of Life Choice Act does not address my worst fears.

The ethicist in me knows why. It is impossibly tricky to know when a person with dementia is no longer experiencing pleasure, when their life might be "not worth living" and when to use their own advanced directive to kill them.

We know from talking with people with acquired disabilities that their fears about being disabled in the future were usually worse than their actual experience of quality of life as a person with disability.

When a person has end-stage dementia, they do not have the capacity to answer if now is the right time. I doubt the paradox can be solved.

My personal fears are just that, personal fears.

This brings me to my role as a doctor. In this role I have a strong opinion about the proposed legislation.

The End of Life Choice Act puts great burdens on to doctors. In every human endeavour there is the opportunity for errors of judgement, mistakes and misuse.

After EAD, when something goes badly wrong, there is no chance to try again to get it right. Death is unforgiving.

I do not know what that mistake will be, but when it is made, the injuries will spread past the person who died, to the family and friends that person left behind, to the provider and to society and to their trust in doctors.

The provider will bear the brunt of the anger and outrage because they will have been the hands that injected a lethal substance into someone’s vein for the purpose of causing death.

The bereaved family may never recover from their grief and outrage that their loved one was killed.

Society, all of us, have trusted doctors for generations to not purposefully shorten human life.

Any perception of, or even suspicion of, error or misjudgement resulting in the death of an unconsenting or highly vulnerable person will cause ripples of anger and mistrust through society.

I have worked as a hospice and palliative medicine specialist for the past 15 years: in my work, I allow people to die a more comfortable natural death.

Hastening death is against the founding principles of Hospice and is a crucial line in the sand for me.

When I make a clinical decision, I ask myself if I am allowing a person to die comfortably, or am I hastening their death?

I do not intentionally hasten death. I do alleviate suffering.

As a team, my colleagues and I are very good at helping people find a comfortable end-of-life path.

Our experience is that the fear of suffering and disability is worse than the actual experienced journey towards death.

When supported with high quality wrap-around care, suffering can be minimised and managed and that EAD, purposefully hastening death, is not needed nor helpful.

Palliative care professionals are very keen to have the public understand that purposefully hastening death is not part of palliative care and if and when EAD is legal in New Zealand, it will be separate from their work and not a part of hospice care.

In summary, I would be personally comforted by the thought that EAD could provide me control over my end-of-life journey.

However, I think that my fears and those of others, are better addressed by supportive symptom management and I ultimately think that the EOL Choice legislation could do more harm than good.

I will not be a provider and I believe the current legislation will cause injury.

 

Prof Colin Gavaghan. PHOTO: SUPPLIED
Prof Colin Gavaghan. PHOTO: SUPPLIED

YES - COLIN GAVAGHAN

Dying: it is a risky business.

We cannot do much about the fact of our mortality, but the timing and manner of how we die are often subject to human choice.

Choices bring risks — risks of mistakes, risks of regrets.

In the run-up to the End of Life Choice referendum, we are going to hear a lot about the risks of assisted dying (AD).

And although I will be voting "Yes" in the referendum, I think we are right to ask hard questions about those risks.

But there are other sorts of risks, too. Risks of people dying drawn-out, awful deaths.

We probably all know of someone whose last days were such a tragic ordeal that the end came as a blessed relief.

For whom the end involved a brutal stripping away of dignity, autonomy, humanity.

With good palliative care, really bad deaths should be exceptional.

Sadly, they cannot be ruled out altogether.

Five years ago, Lecretia Seales petitioned the High Court to allow her the option of AD if her incurable brain tumour caused her unbearable suffering. The judge ruled against her.

But he also admitted no-one could guarantee Lecretia’s death would be a good, even a tolerable one.

With luck, her symptoms could be controlled, but it could not be guaranteed.

While the Court could not give Lecretia the reassurance she needed, we now have the choice to give that reassurance to other people like her, who know they are dying and who want to prepare for the worst.

What about those risks, though?

Can we ever say with absolute certainty that those given AD will be making a completely voluntary choice? That mistakes will not be made about terminal diagnosis?

Uncomfortable truth time: no, we cannot.

We cannot ever completely rule out these sorts of risks.

But here is the thing. That is true of every single end of life decision, even those we already allow.

It is true when someone with cancer says no to another round of chemotherapy; when a Jehovah’s Witness refuses a life-saving blood transfusion; when someone fills in a living will saying they do not want to be resuscitated if their heart stops beating.

All of those decisions are risky, to some extent.

None of them can be 100% free of the possibility that someone has been subject to pressure, suffering from a mental disorder, or that a better treatment, maybe even a cure, might be just around the corner.

All the things opponents say about AD, in other words, are true of the choices we already allow.

The End of Life Choice Act has stronger protections than any of those other choices. For instance:

• While we are currently allowed to refuse even treatment that would return us to full health, AD will only be available to those who are incurably terminally ill.

• The age of consent to other medical decisions is 16, but AD will only be available to people over 18.

•  Unlike treatment refusals, you will not be able to authorise AD in advance, via a living will.

•  The patient will need to be examined by a second, independent doctor, and if there are any doubts about their capacity, by a psychiatrist too.

One hundred percent guaranteed risk free? No. But a whole lot safer than some of the ways people can choose to die now.

Opponents will argue that this is different, that actively shortening someone’s life is different from passively allowing them to die, or even sort of actively passively withdrawing life support.

People have different views about the ethics of that distinction.

For some doctors, it certainly seems to feel like an important difference emotionally.

The Act, though, makes it clear that doctors with conscientious objections do not have to be involved.

When it comes to the risks to the patient, though, I honestly do not think the Act poses any bigger risks than we currently deal with. Probably the opposite.

More than that, we need to think of the risks it will be reducing and avoiding.

The risk of ending our days without control, or dignity, or a tolerable quality of life. The risk of having our last moments be dictated by someone else’s choices or values, rather than our own.

 

Even people of faith are divided on the End of Life Choice Act. Here are two opposing views.

Latuivai Kioa Latu. PHOTO: SUPPLIED
Latuivai Kioa Latu. PHOTO: SUPPLIED

NO - LATUIVAI KIOA LATU

For those born and bred in the Alamoana (Oceania or Pasifika way), in a faith-based community, where reciprocal caring is deep in our culture, "life" is seen as a gift from God.

I do not support the End of Life Choice Act coming into force for two main reasons.

Firstly, for us, to live or die is not a person’s choice. To allow people, even with a terminal illness, to request assisted dying goes beyond providing relief for suffering and undermines the sanctity of human life and is against our collective beliefs and cultural practices.

Given the intended purpose of the proposed Act is "to give persons who have a terminal illness and who meet certain criteria the option of lawfully requesting medical assistance to end their lives" and "to establish a lawful process for assisting eligible persons who exercise that option", it is not hard to believe how the assisted death Bill can be seen a killer Bill or a suicidal Act.

Secondly, the political process has undermined our cultural norms.

As previously stated, this Act is extremely sensitive for us, the Tagata o le Moana or Oceanians.

As such, we would typically seek adequate public consultations, including the opinions of faith-based groups and elders. These conversations would help people better understand cultural provisions which already exist in order to make an informed choice regarding the euthanasia referendum.

As tama a le Eleele or children born of the land (as most Moana peoples believe), we understand and experience all of life as relational, as manifested through cultural values of fetausiai (reciprocal caring/service) and fefaaaloaloai (mutual respect/love), which are familial customary practices evidenced in the relationships between matua (parents/elderly) and fanau (children).

We need a more relational, reciprocal, inclusive and beneficial practice, based on caring and being kind, especially in this Covid-19 era.

Indeed, we need to start these conversations.

In the meantime, as far as the referendum is concerned, our concerns should be reflected in the simple answer: "No, I do not support the End of Life Choice Act coming into force."

May the Creator, God Himself, continue to reign over His Creation, lest we, the dust of the ground forget, the breath of life is divinely given and must be divinely taken away.

Latuivai Kioa Latu is a University of Otago PhD student.

 

Ian Harris. PHOTO: SUPPLIED
Ian Harris. PHOTO: SUPPLIED

YES - IAN HARRIS

The overriding question raised by the End of Life Choice Act is not for me one of law, nor the sanctity of life, nor the medical options available to prolong a person’s life. It goes far deeper, to put compassion front and centre.

If we highlight compassion, the emphasis shifts from how a person might end his or her life, to how they might live successfully to the very end - and then, accepting death as a basic condition of life, to die well.

There is more than one way to achieve this. A compassionate response to someone who feels their life is complete and who wishes to round it off gently will range from providing palliative care to enabling them to end it in a controlled and dignified way, and in their own time and space. The central moral question is: What does love require for this person, in his or her specific circumstances, at this time? It’s also the central religious question.

That’s why I shy away from a moral absolutism that says any move to allow assisted dying must always be ruled out.

Palliative care, when available and effective, should obviously be the first option. But for the terminally ill in pain beyond relief, I cannot believe that love requires them to prolong their misery in order to satisfy someone else’s sense of right and wrong. There will be some sufferers - I hope not many - for whom assisting an earlier death will be both a responsible and compassionate choice. The referendum will either leave that option open or ensure it remains closed off.

Some fear that saying "Yes" in October will lead to a steady widening of assisted dying provisions some time in the future. That would trigger a new debate - but it is not what they are being asked to vote on.

This Act is restricted, fair and appropriate. Only the patient can initiate the process, and after an interval must confirm his or her wish. They must have a terminal illness, with death likely within six months. They must be clear about what they are asking for. They must be suffering in a way that cannot be eased.

There is no compulsion. Overseas, only half of those who have been prescribed pills to end their life early use them. The choice is theirs, and it should not be denied them.

Ian Harris is a journalist and commentator.

 

Comments

Sometimes euthanasia can keep at bay a "Keep alive at all costs" system involving resuscitation after the brain or organs have surrendered life.

What are you going to put on the death certificate? Killed by the state?