Lecretia Seales

Do you want to have choice over how your life ends?

Jess Berentson-ShawHealth

The very public life and death of Lecretia Seales last year and the continuing work done in her name by her husband Matt Vickers has thrown the issue of assisted dying into the public forum again.

Many New Zealanders have stories to tell about death and dying and the choices that we have, including us at the Morgan Foundation

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Jess and Seb’s Story

It is rare for a researcher to experience the reality of what we research. Last year when my generous, eccentric, larger than life, and very active Stepfather died within 14 oh so very brief (but somehow endless) weeks of being diagnosed with cancer, I joined that club no one wants to be a member of – watching someone you love suffer and die. For Seb this was something he never wanted to endure (who would?), but he was clear, it was always part of this core values, that there was a point at which life was not worthwhile, and when he reached this stage assisted dying should be his to choose. His wishes were never realised and he endured as best he could. Seb’s death gave me real insight into a matter that advances many opinions but is often light on evidence. While at times the sorrow of his loss (and the manner of his death) crashes down on me like a southerly swell that rolls in from The Cook’s Strait, the experience has sharpened my thoughts considerably on legalising assisted dying. Specifically, his values and the manner of his dying has led me to think hard about the arguments for and against assisted dying and ask what does the evidence say?

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The latest select committee to “investigate fully public attitudes towards the introduction of legislation which would permit medically-assisted dying in the event of a terminal illness or an irreversible condition which makes life unbearable” is soon to start discussions with public submissions on the bill closing on February 1st. Many people will make many arguments for and against; many of these will be based on opinion, moral beliefs and deep emotions. We think it is important that people have their say and we encourage everyone to submit – but first we need to understand the issue and facts.

In this blog we will look what assisted dying is, and how this needs to be part of a wider conversation about death with dignity.

What do we mean by assisted dying?

This is a sensitive issue, so to have a sensible conversation we have to be really clear what we are talking about in this blog.

When we use the term in this blog ‘assisted dying’, sometimes called physician assisted dying (PAD), we mean assisting the deaths of those people who are already dying of an incurable illness through the provision, but not administration, of lethal medication by a doctor. That means the doctor provides the drugs with which a person can die, but the person has to take the drugs themselves.

We don’t use the term ‘assisted suicide’ in this piece as it CAN mean something different – and can apply to those not incurable, terminal or at an end stage in their life.

We also do not use the term euthanasia as this technically means when a third party ends a patient’s life (e.g. a doctor actually administers the medication).

Finally, we are not talking about the issue of when to start caring for end of life patients instead of treating them. As we have discussed previously this is an important issue given we are facing an ageing population and growing pressures on our health system. But this is a much larger conversation that can follow on from this conversation about assisted dying.

The numbers involved in assisted dying in New Zealand are likely to be small, as we have seen overseas. Regardless, the desire for an assisted death by those who are dying is still a wretched reality faced by many families. People cannot imagine these circumstances until they face them so we won’t know the full value of this change until it is in place. So lets talk about what New Zealanders think about assisted dying.

What do New Zealanders think about Assisted Dying?

Floating around this process are all sorts of numbers and arguments, and the vast majority of polls that you will see are poorly designed or unscientific. The only good solid piece of peer reviewed research (opinion polls aside) was a study published in 2015 by researchers at the University of Auckland. Randomly selected New Zealanders were asked what they thought was the most appropriate medical response to patients who explicitly request assistance in dying, as well as their views on the legalizations of Physician Assisted Dying (PAD).

Overall, 78% of those in they study felt PAD was the most appropriate response in certain situations (for example if there is a loss of dignity or intractable pain). 82% felt it should be legalized, with 65% of these people believing it should only be accessible to those suffering unbearably with little hope of recovery.

This study was not truly representative, but it gives an indication as to how New Zealander’s view assisting those who are dying. Representative polls have been conducted and they put the general publics agreement with assisted dying at 74%. As always, more research would help in this space.

Should it be our choice?

So it seems that most Kiwis back people having the right to choose how they die.

Given that we live a free society, one where individual choice is valued highly, we start from the perspective that people should do what they want to, unless there is a good reason why not. So the issue then becomes, if a person is already dying, why can’t people choose the circumstances?

In the next blog we will look at why the arguments against assisted dying don’t stack up, and therefore, this choice should be available to the individual.

 

The Select Committee will investigate: 1. The factors that contribute to the desire to end one’s life. 2. The effectiveness of services and support available to those who desire to end their own lives. 3. The attitudes of New Zealanders towards the ending of one’s life and the current legal situation. 4. International experiences. 

We encourage you to make a submission to the select committee, which you can do online , by email, or by post. Alternatively, you can complete this form and it will be submitted on your behalf via email.

Please note submissions are public.

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Lecretia’s Choice – End of Year MessageI’ve made a video about Lecretia being named New Zealander of the Year yesterday and a bit more besides. Please consider sharing this message. Have a great Christmas and New Years.http://lecretia.org/you-can-help/

Posted by Lecretia’s Choice on Saturday, December 19, 2015

Do you want to have choice over how your life ends? was last modified: January 19th, 2016 by Jess Berentson-Shaw
About the Author

Jess Berentson-Shaw

Dr Jess Berentson-Shaw is a science researcher working for the Morgan Foundation. Jess holds a PhD in Health Psychology from Victoria University. Jess has over 10 years’ experience working on applying science and evidence to public policy. She worked on improving the use of science in public health practice in NZ, before working as a Research Fellow at University College in London, where she researched how doctors and clinicians translate scientific evidence into their clinical practice. While in the UK she also developed a national data collection system, which was used to determine what factors contribute to poor outcomes for women and babies during pregnancy and birth. On her return to New Zealand she directed a research group that specialised in the independent evaluation and application of research and science to health policy and practice. Jess loves science and what it can do to make the world a fairer place.