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SCIGEN 101 / 101G SCIGEN SPEAKS – Week 11 Lectures

This week you will engage in a deliberative process whereby you will get to converse with
your fellow students on an emotive and controversial issue.

The SPEAKS movement began in the USA in 1995 by a non-profit organisation called
AmericaSpeaks. It focused on trying to create opportunities for citizens to impact decisions
and to encourage public officials to make informed, lasting decisions. AmericaSpeaks
developed and facilitated deliberative methods such as the 21st Century Town Hall Meeting,
which enabled facilitated discussion for 500 to 5,000 participants. America Speaks
unfortunately formally closed its doors in 2014.

SCIGEN SPEAKS mimics, on a much smaller scale, the deliberative process undertaken by
AmericaSpeaks.

This year our deliberation focuses on EUTHANASIA. We will be deciding which of FIVE
Euthanasia options (see below) you would like decision-makers to choose when voting on
how New Zealand should legislate for end of life choices.

The SCIGEN SPEAKS week 11 lectures will cover the following:

Tuesday’s lecture:
You will learn about the SPEAKS philosophy, along with strategies for effective dialogue and
also understand the importance of ‘discourse’ ethics to ensure an effective and safe
learning environment for Wednesday’s dialogue session. This preparatory lecture aims to
provide information that will help guide the deliberative process that takes place in the
dialogue workshop on Wednesday.

Wednesday’s Lecture Dialogue Workshop:
In groups of 12 (2 x study buddy groups) you be asked to deliberate on the topic of
euthanasia to reach a consensus that supports ONE of the following options:

 OPTION 1: NO EUTHANASIA (maintain the status quo)

 OPTION 2: VOLUNTARY EUTHANASIA with the patient’s consent and when the
patient can administer the drug (physician assisted dying)

 OPTION 3: VOLUNTARY EUTHANASIA with the patient’s consent and the drug can be
administered by the patient (Option 2) or by another agreed adult (assisted suicide)

 OPTION 4: Involuntary Euthanasia only (physician assisted dying)

 OPTION 5: ALL FORMS OF EUTHANASIA – Voluntary (Option 2 & 3) & Involuntary
Euthanasia (option 4).
Lecture Workshop Preparation

In preparation for this activity, you are to read the attached FOUR short stories of people /
families facing end of life decisions. These profiles help to provide the context for your
dialogue workshop and will likely provide starting points for your discussion.

Thursday’s Lecture Reflection:

Group leaders will write on the board their group’s consensus decision. We will then
discuss as a class the “thinking” behind group’s decisions.

We will also spend some time reflecting on Wednesday’s activity to explore key learnings
about:
 Deliberative processes.
 Effective strategies for dialogue and ethics for discourse.

We will explore past exam questions on the SCIGEN SPEAKS activities.

Please read the following statement.

The content and discussion in this week’s lectures will engage with euthanasia. As a
controversial topic, it is an emotionally challenging issue for most to engage with. We will do
our best to make this classroom a safe space where we can engage bravely, empathetically
and thoughtfully with this difficult content. While you are encouraged to debate this topic,
please try and be respectful of diverse perspectives to enable an inclusive classroom for
all. If you would like to raise any issues with us about the topic or the management of these
lectures, you are encouraged to contact Emma. Emma will also provide opportunities at the
end of Wednesday’s and Thursday’s lectures for students to provide anonymous feedback.
“All life is sacred”

Option 1: No Euthanasia.

Meredith’s Story

Meredith, a 33 year-old general practitioner, wife and mother of two small boys was
diagnosed with melanoma in 2014. Distraught at the prospect of dying and aware of
the gravity of her condition, Meredith underwent an intensive regime of radiotherapy
and chemotherapy. While there appeared to be some initial improvement in her
condition after two years the cancer had doubled in size and tests found it had
moved to other sites in her body. Her doctors believed it was unlikely Meredith
would survive beyond 2017.

Although Meredith was unsure of the exact path her illness would take, she believed
that good palliative medical care would ensure that she could be kept comfortable
and pain free, to enable her to have quality time with her young boys and her
husband. Included in this was a trip to Disneyland – one of a number of activities
that she had on her ‘bucket-list’.

Meredith was firm in her belief that end-of life care had made huge advances and
that just as medical care could help patients to live well, it could also help them to die
well. When the time came and her death was imminent, she was determined to be
surrounded by her loving family at home, or if needed she and her husband had
agreed that she could be shifted to a hospice, where she could be supported with 24
hour nursing care and her physical and psychological needs could be met and any
pain adequately managed.

As a young mother facing a terminal illness, Meredith rejected assisted suicide,
arguing that it sent a wrong societal message – that if you had a terminal illness that
to end your life was something that society endorsed –as she said “is that really the
kind of society we want?” She felt that as a doctor her goal in life had been to help
patients to both live and die well despite illness, not be to be a gatekeeper for
assisted suicide.

Meredith died in December 2017 in her home, surrounded by her family.
“I Do Not Want To Suffer: My Right to Choose”

Option 2: Voluntary Euthanasia - Physician assisted death with patient’s
consent and drug administered by the patient

…for terminally ill patients or those facing chronic medical conditions that
cannot be relieved or have severe disabilities.

Lecretia’s Story

Lecretia Seales was a lawyer based in Wellington, New Zealand, who worked for
Kensington Swan, Chen Palmer & Partners, the Department of Prime Minister and
Cabinet, and the Law Commission, where she was a Senior Legal & Policy Adviser.
She was diagnosed with brain cancer in 2011. She received surgery to debulk the
tumour but it could not be removed completely. Between 2011 and 2014 she
received radiotherapy and two courses of chemotherapy to deal with the remainder
of the tumour.

In January 2015, Lecretia’s health entered a decline despite her treatments and she
came to the end of her options for treating the cancer effectively.

She began to review her end-of-life alternatives. She discovered that if she was very
lucky, she might die quickly, but that the more likely outcome was that she would
have to undergo a drawn out, undignified death, after losing her mental faculties and
all quality of life. Her other alternative was a death at her own hand which carried
many potential consequences such as stigmatisation from suicide, enhanced pain
and suffering (e.g. if it went wrong), increased stress and so on. Additionally, many
who choose to end their lives often select to die alone, unwilling to risk their friends
and relatives being charged as an accessory.

Lecretia believed there should be a gentler, more compassionate way to die. She
would have liked the choice to receive physician-assisted death, to bring about her
demise no sooner than the point that she determined she had no quality of life, and
before she entered a long period of suffering prior to her death.

On 20 March 2015, Lecretia and her lawyers filed a statement of claim with the High
Court of New Zealand arguing that her GP should not be prosecuted under the
Crimes Act 1961 in assisting her in her death with her consent, and that under the
Bill of Rights Act 1962 she had the right to not be subjected to the unnecessary
suffering of a long, cruel death. Lecretia’s wish was to be able to die at a time of her
choosing, surrounded by her husband and her family, whom she loved very much.

Lecretia passed away on 5 June 2015, on the same day the Seales v Attorney
General judgment was released to the public. She was not assisted to die.

“I am Suffering: My Right to a Dignified Death.”
Option 3: Voluntary Euthanasia - Physician assisted death with patient’s
consent but drug administered by another.

…for terminally ill patients or those facing chronic medical conditions that
cannot be relieved or have severe disabilities.

Tony’s Story

Tony Nicklinson, 58, suffered from 'locked-in' syndrome following a catastrophic
stroke. He was paralysed except for his head and eyes. Tony communicated by
blinking or with limited head movement. He described having no 'privacy or dignity
left.'

Tony said of his life, “it is misery created by the accumulation of lots of things which
are minor in themselves but, taken together, ruin what’s left of my life. I can’t tell you
how significant it would be in my life, or how much peace of mind I would have, just
knowing that I can determine my own life instead of the state telling me what to do -
staying alive regardless of my wishes or how much suffering I have to tolerate until I
die of natural causes. I cannot scratch if I itch, I cannot pick my nose if it is blocked
and I can only eat if I am fed like a baby - only I won’t grow out of it, unlike the
baby. I am washed, dressed and put to bed by carers who are, after all, still
strangers. You try defecating to order while suspended in a sling over a commode
and see how you get on.”

Because of Tony’s condition, he was physically unable to take his own life. It would
have been illegal for his wife to help him to commit suicide and as a crime could
carry a maximum sentence of 14 years in prison. Tony applied to the High Court in
the United Kingdom for a declaration that it would be lawful for a doctor to assist him
in terminating his life. In 2012, the High Court refused to make either declaration.

Tony then took the only option he felt he had open to him and he declined all food
and drink.

The practice of voluntarily stopping eating and drinking (VSED) is seen by some as
an ethically and legally permissible alternative to assisted suicide. VSED refers to
seriously-ill patients refusing to eat and drink for a sustained period of time with the
intention of bringing about their own death. However, doctors who assist patients in
VSED - by encouraging them, or promising pain-relief if VSED is undertaken, are
potentially instrumental in the deaths of the patients, as the suicide would not occur
without them, and they share the patient’s intention of inducing death (Symonds,
2017).

Suicide through palliative starvation or complications associated with VSED is a
common option taken by those who find themselves unable to end their suffering by
other means. Tony died of pneumonia, an illness linked to VSED.
“I am alive - but what is life?”
Option 4: Involuntary Euthanasia - Physician assisted death without patient’s
consent and drug administered by another.

…for terminally ill patients or those facing chronic medical conditions that
cannot be relieved or have severe disabilities.

Mark’s Story

Mark is a 29-year old resident doctor, a representative rugby player for his region,
and active in many other sports. One night driving home from working at the hospital
Mark was involved in a serious car accident. This left Mark in a coma, paralysed
from the neck down. He was placed on a ventilator to assist him to breathe. Two
weeks after the accident with no sign of improvement and remaining in a coma, the
doctors declared Mark brain dead with no likelihood of recovery.

With permission from Mark’s parents, doctors removed his ventilator to enable Mark
to die. However Mark did not die. Nine months later he remains in a coma, in a
nursing home where he receives 24-hour care and fluids and food via a tube.
Although fluids and food could be withheld, Mark’s parents do not wish to subject
him to death by starvation.

Both Mark’s parents and his only sister recollect him saying once following seeing a
rugby player left paralysed from an on-field incident that he would not like to live if
such an accident happened to him. Mark’s work colleagues recall his dedication to
his patients but also his firm belief that patients should have the right to choose how
they died. His friends remember Mark’s love of an active life and say there’s “no way
their mate would want to live like this”.

Mark’s parents would like Mark to die a dignified death, however as assisted suicide
is not legal in New Zealand, Mark remains in a coma.