Whangarei woman facing her final days urges others to open dialogue

Whangarei woman Elizabeth is delighted people are being encouraged to talk about how they might want to die.

It is a conversation that is shifting away from the harsh notion of voluntary euthanasia to a meaningful chat with loved ones about dying with dignity.

Ninety-year old Elizabeth (we will not use her full name to protect her family and friends) is keen for people, families, caregivers and medical advisers to have that talk.

Conversations that Count Day, on April 16, was organised by the National Advance Care Planning Cooperative (ACP) to prompt people to talk with their "partner, a mate, with the girls over lunch, or around the barbie" about the kind of care they would want if they were seriously ill or at the end of their life. It is an initiative supported by Northland District Health Board, which coordinates opportunities for "the conversation", held in April each year.

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Conversations that Count is not a roundabout way into the fraught topic of voluntary euthanasia - its focus is on the right for a person to choose not to prolong an already ending life through medical intervention, and about the need for a person to give prior permission for decisions that need to be made.

Doing so is important for people with a serious illness or are older - but younger people should also think about a plan in case they are affected by an accident or illness and cannot speak for themselves.

But Elizabeth, who has been a long time member of the Voluntary Euthanasia Society, believes that advances in the right for people to make end-of-life decisions have been too slow coming for the likes of herself.

She jokes that anyone who is her age is "terminal" but, in cases like hers, chronic ill health with no hope of recovery makes living a misery.

She is not happy about some of the language in the public argument and in a proposed end-of-life choice parliamentary bill.

"'Unbearable pain?' You cannot define unbearable pain. Who's to say how unbearable physical or mental anguish is?"

And there is the Catch 22.

"As soon as you say 'mental', as in unbearable mental pain, they think of some kind of lunacy and then they won't take notice of your wishes because they think you're mad." Elizabeth lives alone, refuses to go into fulltime care, and has health system-paid "caregivers popping in and fussing over me all the time".

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She has outlived most of her friends and not a day has passed that she has not missed her husband who died 13 years ago.

She is physically tired as a raft of illnesses - heart disease, bowel disease, diabetes and now "the kidneys packing up" - takes its toll. Elizabeth has stopped taking medication, and her understanding doctor monitors her condition carefully. She knows that palliative care will mean her last days are as comfortable as possible.

But, she says, that is not the same as having control over when her life can end.

"Dying with dignity ... why won't they let us?"